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Patriotic Kenny Foundation

Samuel Weidenhofer

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That Good News Girl

Ben Saunders - Flawless Cleaning

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Khloe

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 It comes with great sadness that we have to announce the passing of our precious son Luca Connor Riley Hayes who we sadly lost on the 23rd of August 2026 at the tiny age of 2 months and 28 days old
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 Luca was born on the 26th of may 2026 at 22:55 and it truly was 1 of the scariest and best days of our lives.
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 Our precious Luca was born 7 weeks premature with a condition where his bowels had grown outside of his body, called gastroschisis. Luca had undergone 4 surgeries while being at kings college hospital.
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 finally after 83 days they said Luca was fit to come home, we had 5 JUST 5 days with him but on Saturday the 22nd of August Luca stopped breathing 3 times, after callling 999, we was told this would be due to colic and possibly due to his hernias which was due to be operated on, on the 3rd of September . We was told an emergency ambulance had been dispatched. We then had a call back to say an ambulance would take 45 minutes so could we get him there ourselves, although they didn’t think he needed to be seen but for for peace of mind we could take him ourselves.
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 we got to Medway and Luca was very quickly rushed in to a side room off children’s a&amp;e. We was told they was putting Luca in to a coma as he had become very unwell very quickly.
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 Luca,s tummy had become extremely swollen and blood circulation was being cut off from Luca,s legs. It then become very clear Luca was extremely poorly. They needed to release the gas pressure from Lucas stomach, but Medway was not equipped to do so, so he needed to be transferred to kings. After an hour of trying to stabilise Luca, because he had then gone in to cardiac arrest. We finally got told Luca was stable enough to be transferred, but the journey would be the biggest task as he could pass in transit.
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 An hour later we was at kings, this gave us hope.
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 They got him in to PICU and started surgery at Lucas bed side. However Luca once again went in to cardiac arrest during surgery, they managed to bring Luca back, but shortly after Luca went back in to cardiac arrest, we was asked to go in to his room and told about Lucas condition. At this point they had been working on Luca for some time and it was clear it was not bringing our precious boy back to us.
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 At 00:25 on the 23rd of August Luca passed away with his mummy and daddy right by his side, we sang his favourite song to him and told him how dearly we loved him
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 we obviously want to give Luca the most beautiful send off, because he truly was the most beautiful baby boy we have ever seen, but due to Luca being in hospital for 3 months we have not been able to work. So we are doing something we wish we didn’t have to do and ask for your help. Please donate if you can and please share to your friends and family.
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 Our hearts are broken and it really does not feel real, we had him home for 5 days, just 5 tiny days. However we will treasure those 5 days for the rest of our lives.
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 we love you precious Luca, our sweet sweet baby boy
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 Thankyou for reading,
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 love Lucas very proud parents,
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 Charlie and Demi xx
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Baby Luca

<div>
 Reyshawn Anderson and Gracie Gibson are humbly asking for support while grieving the passing of their little girl, Viviana Grace Anderson. Any contribution, no matter how small, will lift a vast amount of stress from our family. Vivi fought everyday from the day she was born and we wish to honor her in the best way possible without having to worry about any financial burdens. We truly are thankful for anything we receive, even if you are not able to donate any money a simple prayer would be appreciated during this time of distress.
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A Loving Tribute to Little Vivi

<p>Sadly Ena suddenly died last week at the young age of 43 after her 17 month long battle with Stage 4 Cancer. We lost one of the most beautiful souls when Ena passed away. She leaves behind her husband Peter and their severely disabled son, Jordan Chance.
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<p>All of our hearts are breaking and it’s hard to wrap our heads around it. Through all of this heartbreak I feel it’s so important that we come together and rally around Jordan and Peter. That is why I’m starting a memorial fund to help Peter care for Jordan and provide for him just the same as it was when Ena was with them.
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<p>Jordan is the sweetest boy you’ll ever meet but helping him grow was a struggle as a two parent team. To date for Jordan has undergone 26 surgeries and 60 times being under anesthesia…Ena was the driving force behind all of his care and she fought to keep Jordan alive against all odds! Jordan had been hospitalized for 31 months straight and for the first time in 5 years, they were able to spend this past Christmas(2020) for the first time outside of a hospital setting, together! It was a dream they never thought would be possible! Every birthday, every holiday, Jordan lived in a Hospital, THEY lived in a Hospital! Jordan has been emergency medivac’d multiple times across the country to multiple hospitals to find the right and rare <span style="font-size:1.0625rem;">specialists to fix Jordan’s issues and to keep him alive! Unfortunately, with all of his ailments, Jordan will and always need continued medical care as he still fights with periodic hospitalizations. He requires constant medical care with severe medical needs.</span>
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<p>Jordan is such a precious boy and is only 1 of 12 in the world with an extremely rare genetic disorder. With all of his surgeries, through all the pain…he always smiles and is such a happy child! He was diagnosed with Coffin Siris Syndrome(only 80-100 cases worldwide), Pierre Robin Sequence, Hypospadias, Hydronephrosis, Dysphasia, Visceral Hyperalgesia, Gastrointestinal failure, Gastric Outlet Obstruction, G.E.R.D., Cystic Duct Obstruction, Cholecystitis, Global Developmental Delay, Malnutrition, Severe Gastroparesis, Gastric Dysmotility, Feeding Intolerance, Mid Gut volvulus, Gastric volvulus, Intestinal Malrotation, Chronic Anemia, Severe Hypotonia, Pancreatitis(x4), Multiple Blood line infections, Lactobacillus Sepsis, Pulmonary Aspiration, Respiratory infections, Severe OSA’s, Parainfluenza 1, Adenovirus Colitis, Pyloric Stenosis, Pyloroplasty, Respiratory Distress Syndrome, over 8 laparotomy’s, 4 LADS Procedures, Appendectomy, Cholecystectomy, Spinal Cord/Brain surgery of which saved his life and a slew of many other issues way too long to list! He currently has a Gtube, a Jtube placed in his abdomen and is 100% TPN dependent provided through a catheter into his heart. Although long term this is considered fatal, BUT at the moment it’s currently keeping him alive right now! These conditions will mean that Jordan will always be dependent on Pete to take care of him for the rest of this life.
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<p>Due to Ena’s passing Peter is just not able to work, he will need to take on Ena’s roll of 24/7 care for Jordan . Peter was about to open his dream European Automotive Restoration business but Ena’s cancer took a turn for the worst and he had to surrender those funds for her medical aide.
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<p>Peter &amp; Ena have always planned to be together till the end. They had plans, dreams and wanted to travel with Jordan to give him the best life they possibly could. Everything has changed and I would love nothing more than to bless Peter and Jordan with a memorial fund in Ena’s honor that they can use for medical expenses, bills, housing and just help supplement in times of need. ❤️
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Ena Bruno Memorial Fund

You all know Charlie and his life story. He was a 23.4 weeker, weighing less than 2 pounds. He was born addicted to drugs and alcohol. He’s had 56 surgeries. I adopted him when he was 2 years old. He wasn’t expected to last 5 years. Now he won’t make 30. Charlie is in STAGE IV Kidney/Renal failure. He is not a candidate for a transplant. The palliative care team at Connecticut Children’s Medical Center asked Charlie what he wanted to do with the rest of his life and he wants to travel. He wants to go to Universal Studios in Florida, Hawaii, Dubai ☺️ and Japan. I do not expect to do most of these but I would like to do some of them. Any money left over will be donated to another SBS family in a similar situation.

Charlie’s wish

Tamzyn has faced such a battle looking after her daughter and being the best mummy to Luna ever. Unfortunately Luna lost her battle and I’m looking to raise money to support mummy in the up coming events. Please share for Luna and I know Tamzyn wants to donate to the charity first touch and Ronald McDonald house charities who supported throughout Luna’s journey. We miss you so much Luna ❤️

To fund the funeral of Luna and support charities

Little Liam Finley gained his wings this morning at 1:08am 3-30-20! He was a special needs child who passed away due to complications! He has been in the hospital for several weeks fighting! He was a little 6 year old boy who could light up the room!! Please help his family be able to cope a little easier with out having to worry about the struggle of what no parent should have to ever go thru! They have funeral expenses coming up and of course many thing after all this! Liam had 3 other siblings as well! I am asking each and everyone of you to take just one minute of your time and donate, share or at least say a prayer! They will be going tomorrow 3-31-20 to the funeral home and face their worst night mare! This page has been created in order to help the family and I along with a friend received permission as well to do so!

Little Liam

<img src="https://d2g8igdw686xgo.cloudfront.net/41747544_1568171822622308_r.jpeg" alt="41747544_1568171822622308_r.jpeg" width="100%" media_type="3" />I met this family in April of 2018 while we were inpatient at Boston Children's hospital together.<br /><br />It is September of 2019...they have never left the hospital, they are STILL inpatient with their son Jordan...it's been almost TWO YEARS.<br /><br />Just take a second to imagine that....TWO years in the hospital. His parents, Ena and Peter, have not left his side. That is two years of sleepless nights, (a hospital pull out chair is literally one of the most uncomfortable things you can sleep on), two years of watching your child in pain, two years of no privacy, two years of being in a tiny confined room...two years.<br /><br />Jordan is very medically complex. Most recently, they worked very hard to get to one of the top hospitals, where they have one of the top GI teams in the US. Jordan underwent an extremely complex surgery, to try and help his stomach and intestines, so he can tolerate any sort of feeds. He then had to have two more emergency surgeries due to complications...and at one point he turned blue and coded. <br /><br />no parent should have to watch their child suffer like that...on a daily basis.<br /><br />Jordan is a warrior in every sense of the word. No matter how much he's been through (There is SO SO much more, I haven't even scratched the surface of what he's been through), he still has so much love for those around him.<br /><br />Complication after complication, Jordan now faces yet another surgery...a risky surgery where they will need to operate on his skull and spine. <br /><br />Being in the hospital for almost two years, you can imagine the financial strain it has caused. Please, please consider helping this family. Any contribution will help them, as they are in desperate need. Please show them some love! <br /><br />Please also pray for them! Pray for Jordan's healing, and that they will be able to take him home. <br /><br />This family desperately needs your help, any contribution WILL make a difference!!<br /><br />Thank you and God bless you!

Helping the Bruno Family

an upper peninsula Baby acelynn was born with all of her organs except her heart and lungs outside of her body. She has beaten all odds in her seven month life. she was born at u of m motts childrens hospital where she has spent her whole life inside of the NICU,  with mama by her side its almost impossible to remain close to NICU and still maintain financial stability. <img src="https://d2g8igdw686xgo.cloudfront.net/40880544_1564877679703557_r.jpeg" width="100%" media_type="3" alt="40880544_1564877679703557_r.jpeg" />Acelynn Attention UPDATE: Acelynns abdominal wall is officially closed as of Monday (With a mesh material) as you've known the holes in her small intestine were a huge problem with nutrients and weight gain. Normally this surgery doesnt happen until the babies are one year old, but ace has shown she was ready to start moving forward. So, after a seven hour long surgery, and a lot of worry acelynns organs have been repaired and put back where they were supposed to be. They have fixed the holes in her small intestine and hooked everything back up. She only remains with 33 cms of small intestine (225 cms being normal) but she still has a chance to gain all her nutrients by food by mouth. Right now, is a very crucial time because the surgeons have done their part, now acelynn must do hers, and put up her fists and fight like I know she will. She is intubated once again, while heavily sedated to have her little body rest. Once the swelling has gone down, and we can get her fed we will really know what organs work and what doesnt. Almost all of her organs are back inside, kidneys, and bowels. The liver and stomach are outside in the mesh. We still have a long road ahead of us with acelynns care but we are making moves to go home.

Aces angels baby born with organs outside of body

At 12 weeks pregnant we were told our baby would be born with a birth defect called Gastroschisis and had to be delivered at Hartford Hospital, would be sent to surgery right away and would need to stay in the NICU for atleast 3-4 months. Gastroschisis is a birth defect of the abdominal (belly) wall. The baby's intestines are found outside of the baby's body, exiting through a hole beside the belly button. <br /><br />We didn’t know what Gastroschisis was so we turned to the internet, to only find the worst. We tried to stay positive but couldn’t help but feel worried and a bit broken hearted. Even when the doctors told us over and over again that they were confident she’d be fine, we still had so many other questions with little answers not knowing what to expect. At 20 weeks the doctors at Maternal Fetal Medicine told us she had a blockage in her bowel, and what happened next we did not expect. The day of the unknown came and at 35 weeks Mia decided she was coming out early. Her bowel decided to go back in on it's own and unfortunately the blockage made it so there was no blood flowing throughout the rest of her bowel and it had died. We are currently working with 20cm of bowel, her bowel is not connected to her colon. The surgeons are hopeful that leaving it disconnected will give her bowels time to grow and heal into healthy tissue. Mia is continuing to show us she is a Gastro Warrior and we are praying she is able to break out of the NICU and to come home with us soon. <br /><br />We also have two other daughters, a 6 and a 7 year old who come with us every day to visit their baby sister. Our commute to the hospital is about 1 hour and 20 minutes. With Jorge being out of work and Katelyn being a stay at home mom, recovering from her Csection, trying to be with their newborn in the NICU and trying to support a family of now 5, bills and expenses are piling up. We are not the type of family to just ask for things to be given to us, nor do we like to take from anyone. Unfortunately with things being so tight right now, we need to ask for some help. Please pray for Mia, and if you are able to donate big or small or just share this we are so, so grateful for all of your support. We will try and keep everyone as updated as possible.

Mia Fights Gastroschisis

Our wonderful friends gave us some very exciting news recently. They were expecting a baby!
Kyle and Taylor Gillihan already have a beautiful family with their little boy, Easton, and now they will be adding another bouncing baby boy to the family.
Kyle and Taylor found out at their 20 week ultrasound that baby Wade wasn’t growing properly. They have since been referred to Children’s Mercy KC. The doctors are leaning towards a diagnosis of gastroschisis(mechanical) or an omphalocele (genetic). These are both birth defects of the belly wall. As of today, his small and large intestines, stomach, liver and spleen are all free floating in amniotic fluid. Doctors are still unsure of what causes this anomaly.
They recently received news that baby Wade's amniocentesis and echocardiogram results came back with no abnormalities. This great news has been followed up with news that the Children’s Hospital of Philadelphia (CHOP) has approved for them to travel out there next week to conduct further testing. CHOP is one of the most experienced hospitals in these types of births, so we couldn’t be happier to get their guidance. 

Between the tests, travel costs, and the already high costs of prenatal exams and baby prep, costs for the family are already stacking up. I hope that we can meet or exceed our goal to help ease some of the stress from their already heavy minds. Every little bit helps. As simple as it sounds, it really is true. I will keep everyone updated as best as I can throughout the family’s journey. Thank you all for the support and love for the Gillihan family and baby Wade.

Wade’s Warriors- Donate to the Gillihan Family

Baby Ellie's journey here on earth reached many. In her 4 short months she had brought a whole community together. She taught us what it means to fight, she taught us what it means to love, &amp; she taught us what is means to really hit your knees in prayer. Haley &amp; Brandon (her parents) have been the epitome of strong, positive, &amp; determined. Ellie was born May 20, 2019 with Gastroschisis &amp; had many complications &amp; surgery's along the way. She fought, &amp; she fought hard but, her body was tired &amp; she needed to rest. On September 23 she laid in her parents arms &amp; peacefully went to be with God. Although she has been sick her whole life this was an unlikely outcome with her condition &amp; her parents &amp; family were not prepared financially. We have asked a lot of prayers , &amp; I know a lot of the community has already donated to help keep her Haley &amp; Brandon close to Ellie, &amp; it is so very appreciated because without your help, they wouldn't have gotten the time with her that they did. But, we are asking you all to come together one more time to help them lay their sweet girl to rest. Every dollar means the world, &amp; anything helps. Please, keep sharing so we can help them raise as much money as possible. &amp; above all please keep Haley &amp; Brandon in your prayers as they grieve. Thank you.

Funeral  Expenses For Baby Ellie

Kayson was born a fighter and after a tragic swimming pool accident on July 21th is again fighting for his life. We have an amazing amount of prayer warriors and we continue to ask for more. Our little Spiderman will take any and all the prayers you have to give.<br /><br />During this time his Mom, Dad and little sister will be staying in Omaha to be by his side. This Go Fund Me Account will allow them to do so without the financial worry that comes along with that. <br /><br />Due to the outpour of support we've received we will also use this page to provide any updates we can during his recovery. <br /><br />Please be watching for #KaysonStrong shirts coming soon.

#KaysonStrong memorial fund

Sara grew up the youngest of three, in a family devout to giving back. In college, Sara studied Deaf Education, learning to provide students with severe and profound hearing disabilities access to curriculum. She dedicated time and energy to her caseload in the schools, but knew within herself from an early age that becoming a mother was part of her path. As a single person, she entered the tough reality of choosing whether she’d adopt, or raise biological children on her own. Through research, she found out she could adopt embryos, babies already made to love, and could implant them to carry to term. Sara was chosen as a parent worthy of this noble task. She underwent procedures that gave her the gift of parenthood to three beautiful babies. Time and care led her to countless appointments, where she’d learned to love her children, Jacob David, Lucas Paul, and Emma Lou. Early in her second trimester, Sara learned the unimaginable truth that her son, Jacob David, would not meet the family that loved him so. Sara remained diligent. Her two remaining babies were her world. Though they were due to meet the world on May 18th, Emma and Lucas had other plans. They greeted the world on the afternoon of January 30th, and began a long haul in the NICU to become strong enough to go home with their mom, who had loved and cared for them all these months. Both babies were gravely ill after delivery. Through it all, Sara remained at their side to see them through this tough patch in their lives, eagerly anticipating more. She was equipped, she was educated, but she was not ready, when 16 days later, Lucas Paul left this world, having only lived 16 days in the NICU. Sara reeled over the second loss of a son in a single year. But she did not leave her post at Emma’s side. Her Maternity leave lapsed. Her funds ran dry. Sara spent her days by Emma’s side, because Sara is what Emma needs: she’s a parent. She fought hard for that privilege, and she’ll never take it lightly. <br /><br />The enormous financial burdon of this journey has left Sara in a position where supporting her little family’s medical needs is impossible. Sara and Emma need your help!

Sara’s motherhood journey

<img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558131263239807_r.jpeg" alt="39301950_1558131263239807_r.jpeg" width="100%" media_type="3" /><strong>SUPER LYLA'S 8TH AND 9TH MAJOR INTESTINAL SURGERY</strong><br /><br />Lyla is 8 years old and dealing with a gastrointestinal bleed, the only cure is surgery, but not just any surgery. Lyla will be traveling over 1000 miles to one of the top pediatric GI surgeons in the nation.<br />Her family is in need of financial support during this time. <br /><br /><strong>The Back Story</strong> <br />Lyla was born at 31 weeks gestion with Gastroschisis, as well as intestinal atresia and volvulus. Meaning there was a hole in her abdomen wall allowing her intestines to be on the outside of her body and her intestines were tangled, kinked, and lost blood flow. She lost 80% of her intestines. Leaving her to live her life with Short Bowel Syndrome (Short Gut).<br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558132690741847_r.jpeg" alt="39301950_1558132690741847_r.jpeg" width="100%" media_type="3" /><br />By 2 years old Lyla had 6 major intestinal surgeries, and spend most of her life in the hospital. The IV nutrition keeping her alive was distroying her liver. She was in intestinal failure and stage 3 liver disease. I am Lyla's mother, I learned to care for Lyla's central line, IV nutrition, feeding tube, and ostomy care so she could be home as much as possible. Lyla fought many blood infections her first few years.<br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558132744556584_r.jpeg" alt="39301950_1558132744556584_r.jpeg" width="100%" media_type="3" /><br />At 2 1/2 years old Lyla had a reconstructive bowel surgery that was suppose to make things better for Lyla. The STEP procedure was relatively new procedure and all the rave back in 2013. Surgeons all over the nation had caught on and were trying this bowel lengthening surgery on children who only had a small portion of bowel. The surgery was showing great results for many Short Gut babies. But it wasn't until recently that a lot of these patients are starting to show long term complications from this type of surgery.<br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558143835181891_r.jpeg" alt="39301950_1558143835181891_r.jpeg" width="100%" media_type="3" /><br />In Lyla's case she started having gastrointestinal bleeding just 6 months after her STEP procedure. It was this time when we transferred Lyla's care from Cook Children's in Fort Worth to the nations #4 ranked GI department, Texas Children's in Houston.  <br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558150666850599_r.jpeg" alt="39301950_1558150666850599_r.jpeg" width="100%" media_type="3" /><br />Lyla has what's called anastomotic ulcers. These are due to scar tissue and blood flow issues that arise when you cut into intestines. At first we were told that removing the whole section of ulcerated bowel was the only cure, but that was too significant of surgery for Lyla or anyone who was already missing the majority of intestine.<br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558152456206655_r.jpeg" alt="39301950_1558152456206655_r.jpeg" width="100%" media_type="3" /><br />So Lyla was one of the first patients to trial a treatment for these type of ulcers and for the past 5 years she has done okay on these medications, with minimal hospitalizations. At the age 3 1/2 we are able to remove Lyla's IV for the first time in her life. But just this past year Lyla has been loosing more blood than usual and has become ill again.<br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558152770708684_r.jpeg" alt="39301950_1558152770708684_r.jpeg" width="100%" media_type="3" /><br />May 2018, Lyla was scoped again and doctors found that the ulcers had grown and there are more of them, roughly 25 ulcers, some completely circling around the intestine. Some in a completely different section of bowel, where Lyla's bowel was initially connected. <br /><br /><strong>May 2019- when this Gofundme started<br /></strong>Already this year Lyla has been admitted 4 times. May 8th, 2019 she had her 20th blood transfusion. May 17th, 2019 her doctor called to tell us her blood count had already dropped and she was admitted in Houston. She received and iron infusion and then her 21st blood transfusion on May 21st. We flew 1000 miles away to Cincinnati on May 28th. <br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558150434581619_r.jpeg" alt="39301950_1558150434581619_r.jpeg" width="100%" media_type="3" /><br /><strong>Surgery #8</strong><br />Lyla needed surgical intervention. With the help from the Gastroschisis Foundation, we have found that one of the top pediatric GI surgeons in the nation has found a way to repair the blood flow to the STEP section and these type of ulcers, all while removing minimum amount of intestine and without creating a vicious cycle of anastomotic ulcers. <br />This team of doctors is in<br />Cincinnati, OH.<br /><br />Since starting gofundme a lot has changed.<br />There are updates on gofundme from May- July about Lyla's 8th surgery and Pancreatitis. She was discharged in July but continued to bleed. After another scope at Texas Children's we have discovered Lyla needs a 9th surgery once again at Cincinnati Children's. We should be transferring to Cincy very soon.<br /><strong style="font-size:1.0625rem;"><br />Financial needs</strong><br />Lyla is expected to be in the hospital at least a few weeks and then a longer recovery at home. We are hoping for the best, but in reality we know what complications can arise. I will be out of work as long as Lyla needs require me to. <br />Lyla is on what's called the Medically Dependant Childrens Program, this qualifies her for Texas medicaid until age 18, its based on her income alone, this is Lyla's sole insurance. This program also provides respite and nursing care, and covers her tube feeding and medical supplies. We have not ran into any insurance denials as of yet, but its to be expected when traveling outside the state of Texas for care. Getting her transferred a second time has been a insurance fight, but finally approved.<br /><br />Your donations will go towards home bills, food (hospital food can get costly), any travel expenses. My husband/Lyla's dad and baby sister Autumn will have to travel sometime after back and forth. Also Hotel for Trevor and Autumn if Ronald McDonald House can not accommodate. As well as any medical bills we collect along the way. <br /><br /><img src="https://d2g8igdw686xgo.cloudfront.net/39301950_1558150783226726_r.jpeg" alt="39301950_1558150783226726_r.jpeg" width="100%" media_type="3" /><br /><br />Thank you for your help, we greatly appreciate every dollar!<br /><br />You can continue to follow Lyla at <a href="https://www.facebook.com/lovinglylainsideout"><a href="https://www.facebook.com/lovinglylainsideout" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.facebook.com/lovinglylainsideout</a></a>

Super Lyla Needs Surgery: Family Financial Help

Abbey Faith Necastro was born on Wednesday, March 27th 2019 to the some of the most loving, brave, faithful parents that have ever graced the world; Carolina &amp; Brian Necastro. Brian and Carolina also have a young son named Brian. Abbey was born with a complex case of gastroschesis, and was loved and prayed for every moment of her life. She fought hard, and she brought hope and love to this world like no other. It is with great sadness we must say that Abbey went from the arms of her mother into the arms of the Lord on Saturday, April 6th. Abbey never ceased to touch the lives of those around her, bringing joy, hope, love, and faith to her friends, family, and even strangers. She made an imprint on the world that will forever make it a better place. This fund has been set up to help cover the costs of Abbey's funeral service, as well as uncovered medical expenses, loss of wages, supporting the family in this time of grief, etc. The burden that this family is carrying is unimaginable for most, and anything we can do as a community to help will make a difference. Let us come together and support + comfort this family as they find healing.

Baby Abbey's Family & Funeral Fund

ADDISON Grace Gagliardi was born March 30th at 10:26am 7lbs 19ins. Andrew and Tiffany knew there was a problem around the 20th week of pregnancy . ADDISON'S internals were growing on the outside of her stomach, it’s call Gastroschisis. Tiffany had no issues with the birth as-a-matter of fact she was released the same night she gave birth from west penn hospital so she could be with her daughter at children's hospital. <br />ADDISON was doing well for her first three days, she was very alert, eyes wide open and doing better than expected. They were expecting ADDISON to be in the hospital between 30 days to 3 months.  So much went on between day three and six or seven but that is when the doctors informed us she had a blood infection. She did have bed side surgery to stabilize her to a point that she was stable and comfortable and after more tests the doctors said the blood infection may have made its way to the brain. Tiffany and Andrew were with ADDISON daily. Tom and Judy (Tiffany’s parents) and Al and Terri (Andrews parents) were amazed at how they both handled them selves in this delicate but tough time of their life. There was so much love and prayers being poured out for the little nugget aka ADDISON and the love that Tiffany and Andrew have for each other will get them through these rough days.  On Sunday April 7th at 3:30 ish PM she left us peacefully in the arms of her parents.<br /><br />This is a difficult time for Andrew and Tiffany and we are not sure what the financial burden could be for the NICU stay, the funeral and any other expenses.

ADDISON Grace Gagliardi

<img src="https://d2g8igdw686xgo.cloudfront.net/37541584_1551821198573992_r.jpeg" alt="37541584_1551821198573992_r.jpeg" width="100%" media_type="3" /><img src="https://d2g8igdw686xgo.cloudfront.net/37541584_1551821131695626_r.jpeg" alt="37541584_1551821131695626_r.jpeg" width="100%" media_type="3" />We are raising money to pay for Alyssa to see the best MALS surgeon in the nation, Dr. Hsu in Connecticut. <br />Alyssa has suffered for over a year in severe pain and gone through multiple testing to find what was wrong with her. <br />After finally going to Cincinnati Children’s Hospital they were able to see what other Doctors did not see!! They found out what was wrong with her!!  She has MALS! <br />Due to also finding a complicating accessory left gastric artery that could make surgery become fatal, she will need the absolute BEST and most experienced surgeon to do the procedure. <br />We are trying to cover our travel expenses and copay to see Dr.Hsu on March 22 for our first visit.  <br />Please help us meet our expenses so Alyssa can get some answers and look forward to a life free of pain in the future!!

Helping Alyssa Overcome MALS

I am asking every person to stop and take a moment to read this message...<br /><br />It is for a very special young man who is battling an illness called Short Gut Syndrome. Elijah is his name. Elijah was born with a disorder known as Gastroschesis (intestines on the outside of his stomach). Since his diagnosis, he has lost most of his intestines which is known as Short Gut Syndrome. As almost everything in life, when one thing happens, there’s usually a chain reaction. Elijah’s chain reaction is that the medications he needs to keep him alive and “healthy”, have done a lot of damage to his other organs and in-turn they are failing. If you’ve ever heard of a Catch 22, here it is.<br /><br />At nine years old, Elijah has been struggling with this disease his entire life. He is all too familiar with long, seemingly unending hospitals visits. He has suffered more pain in his short life than most of us have in our entire adult lives. But with all of that, he maintains his boyish silliness and thirst for life. He craves the normalcy that most children get to experience: running around with siblings, going for ice cream with friends, or simply going to school without fear of what kind of infection he will get due to his severe susceptibility to common sicknesses. He’s a boy that loves to play with LEGO’s and drive his mother and sister bananas. <br /><br />One of life’s greatest simple pleasures that most of us take for granted....is eating. Elijah has never been able to partake in this. With this unrelenting syndrome, Elijah is unable to consume any amount of regular food and has been on a strict formula his entire life. (He is fed via TPN-through his veins) Please pause for a moment to imagine what life would be like if you were unable enjoy any food: a bite of pizza, a lick of ice cream, a strand of pasta.<br /><br />Through all of these obstacles, he has two SUPERWOMEN by his side; his mother Tabbitha and his sister Sara. Tabbitha is the epitome of what strength is. She is his mother, friend, nurse, comedian, teacher, mentor, and confidant. She builds him up and pushes him to try that which he fears. She shows him unending love and encourages him to the embrace the life he’s been given. As difficult as Elijah’s condition is, Tabbitha has done her absolute best to provide nurturing experiences for both Elijah and Sara. (Check our their nature hikes and explorations on FB ) She continues to fight for him every step of the way and has done so as a single mom. <br /><br />It is time to show Tabbitha that she is not alone. It takes a village to come together to help and heal one another. We are that village and we need your support. Please take a moment and donate what you can for this cause. No donation is too small. Donations will go toward Elijah‘s medical expenses and costs of basic needs for Tabbitha and Sara. Prayers are also welcome and extremely appreciated.<br /><br />Elijah, Tabbitha and Sara need our support!

Elijah’s Fight

Rhyder Gene Montgomery was born on 2/1/2019 with Gastroschisis,  a condition where his intestines grew outside his body during pregnancy. Rhyder will have to stay at Cooks Children Hospital for a minimum of 6-8 weeks for surgeries and recovery. Amber and Jason live in Wichita Falls with Amber's 2 young boys.<br />Rhyder has currently undergone 2 surgeries with more possible in the future, he is in great hands with the wonderful staff at Cooks Children's. <br />We are asking for any help as Rhyder and his parents have a long road ahead of them. <br /><br />In addition, Rhyder's Mom, Amber Maxwell, will be undergoing physical therapy due to partial numbness in her right leg.  Jason has been wonderful with helping Amber move between Harris Methodist to Cook's Children and is currently taking unpaid time off from work because she is unable to walk without assistance. Jason will need to leave Amber and Rhyder to return to work as they are currently living on 1 income until Rhyder is released to go home. Amber will have to stay in Fort Worth alone at either Cook's Hospital or a near by hotel for the next 6-8 weeks. With 1 income this is going to be very difficult for them both. <br /><br />Your support and continued prayers are greatly appreciated during this very difficult time. <br />#TeamRhyder

Rhyder Gene Montgomery

Milan Matteo was born 10 weeks early due to preeclampsia and growth restriction. He made his big entrance to this world at 2 lbs 4 oz. On day 3 of life, Milan had a bowel perforation requiring his first surgery. Two weeks later after no improvement, he went to the OR for the second time, requiring the placement of an ileostomy. <br /><br />About a month later it was time to put him back together since he was not able to tolerated feeds and his stoma had protruded. He lost more intestine but ended up getting reconnected yet he was never able to pass stool. <br /><br />Surgery number 4 happened just 3 weeks after, this time it was an obstruction. The recovery for this surgery was the worst, we got a call the next morning from the doctor letting us know his body was in shock and really really sick. <br /><br />He was able to recovered but yet again not able to pass stool and his belly kept getting distended. <br /><br />On December 5th we were told he had perforated again! He went to the OR for the 5th time for an emergency surgery. Just two weeks after he almost lost his life due to the rough recovery. We were in complete disbelieve and I as a mom was preparing myself to let him go. I just couldn't wrap my head around the idea of this little tiny body being able to handle so much. I almost lost faith on him but he proved me wrong and showed me the SuperMilan he is! <br /><br />He now has an ileostomy AGAIN! In total he has lost 50 cm of intestine. He has never been able to tolerate full feedings, has had problems with dumping, dehydration, and electrolyte imbalances. He is being treated as a short bowel baby. His intestines don't have the ability to fully digest and absorb nutrients essential to live. Due to this he is fully dependent on TPN, nutrition he gets through his veins. The current medical team does not have a clear explanation or diagnosis for all the complications and intestinal issues he has had. <br /><br />The plan was to take him for a 6th surgery where would have to lose more intestine due to a new obstruction on the lower part of his bowel, and lose his ileocecal valve, which would have a life long impact on him.  <br /><br />The hope is to get Milan into a Top Intestinal Rehabilitation program as soon as possible for a second opinion. Hopefully to finally be able to get some answers and prevent him from having more drastic surgeries and complications in the future. Doctor's at Cincinnati Children's Hospital have been advocating for Milan to get there, but it has been a real fight with insurance, doctors, and people who believes this is almost an impossible task. <br /><br />As a family we have already suffered a great deal financially with out of pocket expenses, not being able to work as much. We could use your help in getting Milan to Cincinnati Children's, and should a transfer happen, I as a mom would have to temporarily relocate until Milan receives the specialized care he needs and a plan to bring home to be shared with the team here in Chicago.<br /><br />The funds would be use for bills, food, transportation, and all out of pocket expenses both here in Chicago and in Cincinnati. I appreciate your help in helping get SuperMilan the care he deserves!

To the rescue for SuperMilan's tummy!

<strong>Felicia is one of the strongest women I’ve ever met.  She is a devoted mother and a hard worker. She’s not one to ask for help so I’m asking for her. Her son Jaden has Gastroparesis- He is in and out of the hospital in KC but also needs special treatments in Boston.  As you can imagine this is very difficult emotionally and financially on this family.  Felicia is Jadens mother, care taker and friend- she is unable to work with his appointments and traveling to Boston for hospital visits.  <br />Through all of this Felicia keeps a positive attitude- she is an amazing mother! <br />Please help this mother and son. <br /><br /></strong>

Help Felicia help Jaden

<a href="http://www.rudyrowland.com/obituary/silas-key?lud=49B1DE99E045EE357D70B553A9D00B05"><a href="http://www.rudyrowland.com/obituary/silas-key?lud=49B1DE99E045EE357D70B553A9D00B05" target="_blank" class="" rel="nofollow noopener noreferrer">http://www.rudyrowland.com/obituary/silas-key?lud=49B1DE99E045EE357D70B553A9D00B05</a></a> As many family and friends already know, my nephew Zachary Key and his wife Amanda Key handed their precious baby boy Silas Grant Key over to the Lord Saturday Morning(11-10-18). As no parent could ever prepare theirselves for this sudden tragedy, my heart and condolences goes out to them. I know with family and friends, they will get through this and become even stronger individuals, as we from day to day do not understand God’s plan. As no parent ever imagines this nor plans for anything like this ever to happen, I wanted to create this page for my nephew and his wife to help for expenses for a beautiful Tombstone to allow them to lay their precious baby boy to rest. I want to thank everyone in advance and anything is appreciated!!

Silas Grant Key

<p dir="ltr">Navaiah is a 17 year old MHS student, who resides in Middletown, CT with her family. She was born with Gastroschisis, Diagnosed with Short Bowel Syndrome and recieved her first Small bowel/liver transplant in 2002 and second small bowel transplant in 2014. Life has been filled with many medical struggles for her, she has spent days, weeks, months in and out of CT Children's Medical Center and Medstar Georgetown Univeristy Hospital. Currently she is inpatient in Georgetown due to a chronic infection/rejection. All funds raised will go directly to her family for medical travel. We are 400 miles away from home and there will be alot of traveling back and fourth as treatment could take a while. Thank you for taking the time to read, please share.
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#teamnavaiah

Rochelle and Ethan went in for a regular OB visit at just 14 weeks pregnant when they found out that their baby had a rare form of gastroschisis. Gastroschisis is a birth defect in the abdominal wall, in which the baby's intestines can be found outside of the body. In months following, after many trips to Marshfield they were prepared for their baby to have surgery immediately after being born to correct her defect.  Rochelle was scheduled to deliver sweet baby Scarlett early at 35 weeks.<br /><br />Scarlett Lynn Bakalars was born on October 7, 2018 and was rushed to Marshfield to be cared for. Unfortunately, Scarlett's surgery did not go according to plan, meaning the surgery could not be completed. The doctors did not catch on her ultrasounds that her blood supply to her small intestine was compromised. This left Ethan and Rochelle with the extremely difficult decision to withdraw all medical care for baby Scarlett leaving Ethan, Rochelle, Arianah and family completely devastated. The doctor's educated Ethan and Rochelle on both scenarios, but never did they prepare them for the worst case scenario. <br /><br />At this time, Ethan and Rochelle have spent every last moment they have with their baby girl until she passes away. Because they are both unable to work at this time, hotel expenses and bills have begun to accrue. <br /><br />Donations of any amount will help Ethan and Rochelle to pay for their bills, hotel expenses, and unexpected funeral expenses for baby Scarlett. If you cannot donate, please share this beautiful families story and pray for their healing during this hard and trying time.

Support For Baby Scarlett

We are almost 4 months into our Ultra Short Gut Syndrome journey and things are starting to get really hard. Noah was born 7 weeks early, with multiple intestinal atresia's and volvulous which required his surgeons to resect all but 3-4 cms of his small intestines. He has had 2 surgeries thus far and hopefully no more in the near future. We spent the first 3 months in the NICU and after fighting our insurance we were finally able to get him to Bostons childrens hospital under the care of an amazing team of doctors.  I'm a so grateful to have him here but being away from home and unable to work has left me in a difficult situation. Noah's father does not provide any assistance until we can get home and have a legal agreement arranged  but with no end in sight we have no idea how long it will take for us to get home. I've been receiving help from family with my bills for now but it's getting to be too much for them to handle. I hate asking for help but I don't know what else I can do for now. <img src="https://d2g8igdw686xgo.cloudfront.net/33375284_1538328836203142_r.jpeg" width="100%" media_type="3" alt="33375284_1538328836203142_r.jpeg" />

Noah's momma needs help

One of the most precious gifts God can grant us is a child. They are sent to us for a specific purpose and we have to trust that God has a plan for each and every one of them. <br /><br />This is baby Everlee - only 4 months old. Everlee is a very happy and energetic baby who has her 2 older brothers and 1 older sister to keep her entertained.  Everlee is a very special baby - what doctors thought was just a small petite baby - Mom knew there was something bigger going on with her. The fact that Meagan (mom) is a nurse but also trusted her motherly instinct with the growth of her child is where we are today.  Everlee was not gaining weight properly and after several pediatric visits there was a reason for concern. <br /><br />Earlier this week Everlee was admitted into Banner Thunderbird Children’s hospital for labs and testing. For being so young, she was so brave. Scans, labs, testing, ultrasounds and then the waiting..... Everlee liver is not functioning properly. <br /><br />Meagan and Jake (mom and Dad) are both army Veterans who have been blessed with 4 beautiful children. Hailee, Jackson, Wesley and Everlee. These babies are their whole world.  Mom has put herself with nursing school and works tirelessly to help support their family. Jake has given his time and body to serve in our armed forces and is a wonderful dad. <br /><br />This family needs our help. Let’s help this family out but sharing what we can with them and trying our best to not let them worry about the incoming medical bills that they will soon be faced with. <br /><br />We pray everyday God shines more and more light on this baby.

Baby Everlee

<strong>WHY they need OUR HELP!<br /><br /></strong>Chase Lane Havard and his mama Karry Lynn Teague deseparately need our help! <br /><br />They currently have been in the Miami area since July 2016 while Chase was hospitalized awaiting an intestinal transplant with no idea as to when they could possibly head home back to Texas.<br /><br />In 2017 he received his call and received his much needed transplant , his recuperation following transplant had some ups and downs, however 3 months later following transplant it was determined that Chase had the beginning of PTLD a form of cancer that is a high risk for transplant patients due to the immunosuppression medications that although help keep the body and organs from rejecting actually takes a toll on the bodies own immune system causing potentional health problems and viruses to arise making the first 1-3 years after transplant a very critical time while the new organs and body adjust. This is why its so important for transplant patients and their families to stay close to the transplant center as like what Chase and his mom have done.<br /><br />They are from Texas and have been away from their family, friends and their community support which on top of everything else is every taxing and stressful to say the least.  Karry had to leave her other children (Chase's siblings) to caregive on behalf of Chase, she also had to walk away from her then current employer knowing that caring for Chase was going to be her TOP and MAIN PRIORITY.<br /><br />After his diagnosis of PTLD (Post Transplant Lymphomic Disorder) he received heavy and high doses of chemotherapy in hopes of attacking it , but unfortunately it hasn't... during this time his immune system requires daily platelets and blood transfusions due to his hematology numbers being drastically low. He is at a very high risk of infections.<br /><br />Two weeks ago Chase was in excruciating abdominal pain and was admitted to the PICU where it was noted that Chase has a peforated bowel that has been leaking feces into his system, a drain tube was placed inorder to help evacuate the bowel but to no avail, Karry was also told that he has infection in there, so as you can imagine he is on heavy doses of IV antibiotics in hopes of kicking the infection. <br /><br />A surgery was scheduled to remove the transplanted bowel, clean him out and get him relisted for another intestinal transplant that would be possibly be a multi-visceral (mutiple organs), which would make the possibilty of going back to Texas not in the cards and that they would have to become temporary Floridians for an undetermined amount of stay.<br /><br />However, yesterday (4/2/2018) surgeons told Karry some grim news that right now surgery of removing the bowel is null and would be potentially kill him and that he is full of infection, the only thing they can do for him right now is to allow the antibiotics to work and to just have time and patience, with much PRAYER. <br /><br />Currently Chase is in the PICU of the Holtz Children's Hospital in Miami, FL where his condition is very critical, his mama has been by his side day and night. She took a part-time job at a local McDonald's in hopes of earning some money so she and Chase could afford the essentials of every day life, however with Chase recuperating in the hospital it has been next to impossible. <br /><br />The expenses of having a child in the hospital are astronomical which doesn't take into any consideration of the normal daily living expenses a family goes through.  Right now Karry's main focus is bringing her son Chase through this most critical point of his journey.<br /><br />Our job as friends and family of this family to help get them through this financial crisis is to share/repost and fundraise on their behalf... Funds whatever can be raised right now would greatly be appreciated to relieve some of their financial burdens on top of what they are already dealing with. <br /><br />Any amount would greatly help them and from us "transplant moms and families" who have lived this life with our own children and love this family like they were our own, Chase and his mama can use all the support they can get and we hope you will feel compelled to help them in any way possible.

Helping Chase thru his journey!

We are a team of 8 friends who have an aim to climb Kilimanjaro with a distinct purpose in mind. To raise £250,000 for Mind and The GEM Appeal Charities.<br /><br /><br />Tragedy can befall anyone and so these two charities are meaningful to all of our climbers but particularly to wife of Leeds United’s Andrew Lonergan, Jennifer, and wife of Sheffield United’s Billy Sharp, Jade. <br /><br /><br />Why the GEM Appeal?<br /><br /><br />11 years ago, Jennifer and Andrew welcomed their first daughter Millie into the world. Soon after she was born, after having a routine heel prick test they found out that she had a rare metabolic condition called Phenylketonuria (PKU). Phenylketonuria, is a genetic disorder of the metabolism which without treatment can lead to a variety of life-shortening mental and development problems including seizures. <br /><br /><br />Since Millie’s diagnosis Jen has received unwavering support from Karen Johnson, founder of The Gem Appeal which was formed to support families of children with genetic disorders and is pivotal in the raising of money for the Willink Unit at the Royal Manchester Children’s hospital where Millie is treated.<br /><br /><br />We want to give something back and hope that the money raised by our challenge will help raise funds to allow the charity to purchase a new machine which will help to save little lives.<br /><br /><br />Why Mind?<br /><br /><br />In 2011 Jade and Billy lost their 2 day old little boy Luey, to a condition called gastroschisis. Jade found herself alone daily with aching arms and a nursery missing a baby. Quite soon after she felt herself slipping into a pretty dark place. The joy of life had gone and the future looked pretty empty. Mind provided crucial support for Jade, helping her get back on track mentally.<br /><br /><br />In August 2013, Jen tragically lost her brother to suicide. Anthony had suffered with depression for many years and on the 19th August the struggle became too much and he took his own life. Sadly this isn’t uncommon and the statistics are frightening. <br /><br /><br />The support Mind provide to people is invaluable, and so we want to raise awareness and provide funds to continue to support those in need. <br /><br /><br />Please help support our mission by checking out our website and donating whatever you can.<br /><br /><br /><a href="https://www.250kilimanjaro.co.uk/" target="_blank" rel="noreferrer noopener">www.250kilimanjaro.co.uk/</a>

TEAM 250 KILIMANJARO

<p dir="ltr">Jaxon and Natalie have just given life to an amazing little boy. A little boy that is going to need a lot of love and care for as long as it takes. They are two of the most beautiful and strong people I have ever met and had the privilege to call family. I believe a lot of people would agree with this as well. This is a chance just to give a little and help if you can. Giving two new parents a bit of a hand up and show how much we love them.<br /><img src="https://d2g8igdw686xgo.cloudfront.net/22276146_1500089984.8078_funddescription.jpg" alt="22276146_1500089984.8078_funddescription.jpg" />
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Dexter and Family Ongoing.

Please look at my Facebook page ‘Behindhersmile’ for more about my story.<br />I have a condition called ‘Neuropathic Enteric Dysmotility’ otherwise known as a form of Intestinal Failure. I was born with my intestines outside of my body and needed surgery immediately after birth. I was lucky enough to have a good childhood and was well. At 10 years old I suddenly came down with Peritonitis (infection of the bowel) I had surgery again to cut away part of my intestines and remove all infection. This was a success and the doctors thought that would be the end of the problems. When I turned 18 in 2013 things went wrong. Suddenly I was unable to eat without pain and feeling sick, this got worse and worse. I was constantly in A&amp;E who couldn’t find the problem. We came across a hospital called St Marks which is a specialist hospital for bowel related issues and intestinal failure. I managed to get a consultation with Professor Clark who agreed to help me. By this point she told me that due to the amount of weight I had lost and continued to loose due to not being able to eat, if I hadn’t seen her when I did, I would no longer be alive! Therefore she admitted me urgently in June 2014. I underwent various tests and eventually had a laparotomy (incision all the way down your torso). This was when Prof Clark discovered the issues. The bowel was all in the wrong places, I had a complete malrotation, a huge amount of scarring from previous surgery which was causing my intestines to stick together and onto the stomach wall. Prof Clark took biopsies (cut out tiny segments) to send them to the lab to get a diagnosis. Seeing the damage, she had no option but to disconnect my small intestine and bring it out into a stoma. (Usually known as colostomy or stoma bag) she also had to put in a central line. This is a way of getting direct access to the veins, as now I was having to be fed through an IV drip called TPN (total parenteral nutrition) in order to stop me losing any more weight. It had to be IV because my stomach issues meant that I don’t absorb the important vitamins, fluids and minerals. <br />It is now 4 years on and I am still under the care of St Marks under the intestinal failure team. I still have a central line in place, as it’s the only way I can stay hydrated and get minerals and calories. However I am now on my 7th Hickman line since 2014. Due to me getting life threatening sepsis 6 times in every line I have had. I also still have my Ileostomy (stoma) bag. This can’t be reversed and will be with me for life because the nerves in the bowel are beyond repair and so it would be too dangerous. <br />I take lots of medications every day to make the symptoms a little easier. I have to take Fentanyl (a very strong opiate painkiller) nutritional supplements, anti sickness etc. Due to absorption problems, I cannot just take a tablet. I have to have medication in other forms, eg. Patches which stick onto the skin and release the drug, injections, medication that melts under the tongue, IV through my central line. <br />These medications are so important when trying to live life as normal as possible. I cannot work due to these issues. <br />One of the medications I am on is an anti-emetic (anti sickness) it is given both injection or IV. Without it I cannot even sip water. Due to my GP cutting budgets and it being too expensive, they are refusing me the correct amount of the drug for the entire month. Although it is on my repeat prescriptions they can’t afford an entire month. They are also arguing that they will not supply the needles and syringes required to administer the medication. Simply due to the cost of it. I was told to either ‘buy the needles on amazon’ or ‘go to a needle exchange’ which I think is absolutely disgusting. You cannot guarantee that needles are sterile from buying them from a stranger on the internet! And I am not happy to have to go to a needle exchange on my own In my condition due to money! As you can imagine someone that needs a simple drug to stop you being in A&amp;E and live a relatively normal life and being told it’s money related is heart breaking! <br />Therefore I have recently had to go and see a private GP to ask their opinion, they agreed this is insane and not fair. I barely had the money just for the consultation as I am only on benefits. However this GP was amazing and so supportive. She done a Private prescription for me which supplies the needles and syringes in order to administer the drug safely and in a sterile manner. And a month supply of the Anti-sickness drug as well. I was so so happy that finally someone was willing to help. That was until I saw the price! <br />So I am making this page to try and raise £500 so that I can have the sterile supplies of needles and syringes and a month of my anti sickness. If anyone would like to donate or help in anyway I would be absolutely blown away and so grateful, as this would change my life! In the meantime I will be making a complaint about the fact I’ve had to do this all on my own. But for now I just want to be able to live a relatively normal life. <br />£500 would be able to supply a box of 100 needles, a supply of 50 sterile syringes and an entire month supply of anti sickness. <br />Thank you to everyone who even just reads my story it means the world to me! <br />I also have a Facebook awareness page called ‘Behindhersmile’ which I use to document my ongoing treatment and condition. <br />After this gofundme page going live it has been in the press in newspapers and online news. This is due the outrage at the community at how a patient can be told to go on Amazon and buy ‘sterile’ needles. And even more the fact that I am expected to pay for medication and supplies which I need to stop me being in hospital. <br />This was in The Sun, the Metro paper and online, Dailymail, Inews, the Mirror etc. If you search my name it will show you if you’d like to read any of the articles.

Lifechanging medication not on NHS

Raising money for medical expenses, and traveling expenses for our daughter Lilly. Lilly received a small intestine transplant on July 15th, 2017. Just 5 days before her 5th birthday (7/20) and is still having several complications, including rejection. She has unfortunately been in the hospital now for over 9 months, and we still don't know when she is able to come home....<br />Lilly was born with a condition called Gastroschesis (short gut syndrome), where most of her intestines were born on the outside. Unfortunately  her condition was so sever, that the hole where the intestines  came out of closed and killed off everything that was on the outside. So just not even a day old, she had to have surgery to remove all the dead intestines, and reconnect what left was good. After the surgeons reconnected everything, Lilly ended up having too short of gut to even tolerate feeds. (She could not tolerate formula or even breast milk) So she had to have a PIC line  placed in her arm, and received TPN (IV nutrition) to give her the proper nutrients she needed to survive.  Not even  two weeks old, Lilly had to have another surgery called a  S.T.E.P. procedure (lengthening the intestines) to see if she would finally be able to absorb nutrition in her intestines and handle feeds. Unfortunately, it failed. She was still not able to tolerate feeds. Her condition was so complex, ( odds are1 out of 100 gastro kids)  that she had to be transferred to another hospital where they specialize more of her condition. So in August, 2012  (just a few weeks old) got transferred from St. John's hospital in Springfield, IL to Luries Children's hospital in  Chicago, IL  <br />After Lilly was transferred, she continued to be in the NICU for over 3 months before graduating out of the NICU, and onto the GI (gastro intestinal) floor before she was able to come home. The surgeons placed a g/j tube (for feeds and gastric drainage) in hopes for her actually to be able to handle feeds and to give medicine in since she was not able to tolerate any meds by mouth, which also ment she was not able to eat or tolerate regular food as well.. <br />Finally after almost 5 months being in the hospital, the drs finally let Lilly go home for the first time. <br />Almost 6 months later, she had to have another surgery on her intestines. She ended up having an obstruction (blockage) where not only was it causing her to get sick, but also gave her a very bad blood infection where it almost took her life.. <br />After the surgeons went in to fix the blockage, they also wanted to do another lengthening procedure in a final attempt in hoping her intestines would work. Unfortunately it did not... her intestines still had poor absorption and did not work or move properly. So the surgeons and Dr's came together and talked to me and my husband and thought it would be a good idea to place Lilly on the transplant list for a small intestine in hopes of giving her a better life. Lilly was only a little over a year old when she was placed on the transplant list.<br />We all waited anxiously for almost 4 Years to receive the call for her transplant.  After battling threw many blood infections, broken bones (she has Very Brittle bones due to the TPN) and many central line replacements, we Finally received the call on July 14th, 2012 that they had found a donor that was a match.  My husband and I couldn't believe it, after all these years of waiting, we finally got the call we have been praying for we were both in tears.  It took us about 5 hours to get up to Chicago  (we live over 300 miles away) to get her to the hospital to get ready for her major surgery. <br />Lilly went into surgery about 6 am on July 15th, 2017 and was in the O.R. for over 12 hours when she was finally able to be transferred to the PICU to recover. It was so hard seeing her in so much pain, and on a ventilator... those memories will always be engraved in our minds... <br />Thankfully she pulled threw, after recovering for almost 2 weeks, she was finally able to be transferred out of the PICU back onto the GI floor where we were hoping she could recover enough so we could bring her home. At the time with how well Lilly was doing, the drs were hoping to have her home between 4-6 weeks if she continued to do well. <br />Unfortunately in September, Lilly's new intestines were obstructed and we're not getting enough blood flow. So she had to go under another major surgery to help fix it. She was in surgery for over 6 hours that day before transferred back into the PICU to recover. This time, the surgery took more of a toll on her than we all thought was going to happen. When the nurses gave her the proper hydration threw iv, her body was leaking out the fluids on the inside causing to press against her internal organs almost causing her kidneys to fail and she was having a hard time breathing. At the time I had also lost my job, being up in the hospital for so long with her. My husband and I were a huge mess. We were hoping things were going to get better, we didn't want to lose our daughter. So the Dr's had lilly go from a ventilator to an oscillator that was easier on her lungs, and that she had to be placed into a medically induced coma to help her heal safely, she also had to go threw dialysis as well due to her kidneys not working so good. She was like that for almost a month before they were able to safely wean her back to the ventilator and was able to get her out of her induced coma. Eventually day after day, she was starting to slowly get better. <br />During Halloween she still remained in the PICU recovering. We also had gotten a phone call that same day that our trailer park where we have called home for over 5 year's was closing down... and that we had until December 1st to find another place. My husband and I were both devestated. Not only was lilly in the hospital still recovering from her transplant, but we were getting ready to lose our home and had to find a new place right before the major holidays. It was heartbreaking, and both my husband and I had lost our jobs due to our daughter being in the hospital recovering and we were there to support her... so my husband and I had to travel back home to get everything packed up, and ready to move and to also look for a new place to live. I would stay for a little over a week before heading back to chicago to spend thanksgiving with our daughter. A week after thanksgiving I get a phone call that my father (Lilly's paw paw) was in the ICU in critical condition after having a major stroke. I'm thankful my husband was there at his house that found him and was able to call 911. I was heartbroken and had to make another trip back home (remind you its almost 5 hours away) to see him, before it was too late. After being there for almost a week and made sure he was able to go to a rehab facility to help him reciver and help unpack at our new house, I had to go back to chicago to be with Lilly. Lilly has a lot of rejection going on with her new intestines. It causes her to be in a lot of pain, and she breaks out in bad fevers. Rejection also can sometimes damage the intestines as well if it's bad enough, and has definitely has taken its toll on Lilly. Not only did Lilly spend Christmas in the hospital, but new years as well. After a couple months of rejection and still complications where she was not able to handle feeds, she had to go under one more major surgery. Due to her body rejecting the new organ, it caused enough damage to the intistine where it closed a small section off where they physically had to go in, remove the section of bad intestines, and reconnect the rest what is good once again. And on top of it also connect a new blood vessel to help stimulate more blood flow to it. Lilly has a genetic disorder that she gets blood clots quite easily, so she has to stay on major blood thinners. On top of blood pressure meds and major steroids, it causes her blood sugar to be high well. Where she has to receive insulin periodically. <br />Thankfully lilly was able to heal really great, and was able to get transferred out of the PICU on the GI floor once again. For several weeks, she continued doing well, started tolerating feeds and was finally able to get out of her room and explore the GI floor to help get her to walk. After several weeks, she was able to hit her goal of 70 mls an hour on her feeding pump, the drs were excited and so were we, we were hoping she would be able to keep the progress up. Then out of no where, rejection hit once again and they had to take her off of feeds because it was causing her to be in so much pain, and since the steroids cause the bodies healing process to be slow, her incision where she has had the major surgeries, started opening back up. It eventually opened up so big you were almost able to see deep down, so they had to place a negative pressure dressing called a wound vac. Thankfully most of it closed almost besides a little portion and they felt comfortable enough to take it off to see how well the rest would heal. <br />Recently in march, Lilly had to go back into the PICU because she was in so much pain, she was also taking very shallowed breaths. So they thought it would be best to take her out of the GI floor and put her back in the PICU until they were able to control her pain and to help her breath better. So they started her off on a small amount of oxygen to the nose. She had a nasal cannula, but they had to switch it out with and oxygen mask because it helped her out more and made her more comfortable. After 2 weeks, she was able to graduate from the oxygen mask from a nose cannula again, and eventually was able to come off of it during the day! Not only was I happy, but Lilly was happy as well to get those things off her face. <br />Currently today, we got the ok for Lilly to be transferred back up to the GI floor where she can continue to recover and hopefully continue on progressing. We are all taking it one day at a time, as that is all we can do and glad she is doing much better at this moment. Hopefully we can get back up to her feed  goals like she once was at before the acute rejection. The Dr's are not sure when she can come home yet, as in 3 months she would be in the hospital already for a year :'(  keep Lilly in your thoughts and prayers, it's so hard seeing go threw so much. She is the sweetest and the strongest little girl I know and her smile brightens up the room and will melt your heart. #TeamLilly<br><img src="https://d2g8igdw686xgo.cloudfront.net/29384100_1524607511.5618_funddescription.jpg" class="not-resizeable" width="100%">

Daughter's Intestine Transplant

Ariah has been fighting her whole life from Phoenix to Philadelphia she is so strong And we will continue to fight for her And bring her back home to her siblings and family who love and are waiting for her to see her for the first time!!!!! We are asking only for help to help us to continue to stay in Philadelphia with her till she is ready to come home and to maintain our home back in Phoenix for our other children till that day comes. Thank you in advance and all donations are beyond appreciated ❤️

Ariahs story

Sarah Lawrence 5/30/17 -11/12/17<br /><br />On November 12th, Sarah past away from complications to a rare disease called Gastroschesis. My family needs your prayers.  <br /><br />Our sweet angel is doing God's work now.

The Global Gastroschisis Foundation

The Global Gastroschisis Foundation

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