Elliot's Army

$27,141 of $30k goal

Raised by 433 people in 2 months
Leah Carter
on behalf of Leah Carter
 NEW HAVEN, MI
As most of our friends and family know my sweet nephew Elliot was born with two very rare and very severe medical conditions; Mass Cell Activation Syndrome (MCAS) and Food Protein Induced Enterocolitis Syndrome (FPIES). These disorders have made it impossible for Elliot to eat. Something we take for granted. To be overly simplistic, his little body literally rejects everything he eats, causing severe and sometimes life-threatening reactions. At nearly 17 months old, he is solely dependent on breastmilk and eats ice chips as a snack.  At this point, Elliots medical status has become severe and urgent. He currently has 2 different feeding tubes, which have not proven  successful.  He has stopped growing and our family is desperate to find him the help he needs.      

My family and I have been encouraging my sister Leah and brother-in-law Dan to start a Gofundme account for months now and after much hesitation and resistance they have finally agreed to allow my family, Elliot's godfather and myself to establish an account on their behalf. They have been very reluctant to accept any monetary donations as they know so many families are in need. But recent changes in Elliot's medical status prompted them to finally agree to our efforts. Funds raised will help to cover out of state medical treatments, medical expenses and every day expenses that a family of six incurs.

The lastest uplate as of Wednesday evening (11/23):  My sister was informed that  Elliot will be admitted to Cincinnati Children's Hospital on Monday to have a PICC line placement and begin TPN. The expected hospital stay is 7 to 10 days and they will be 5 hours from home. Since Elliot has no safe foods, had such a negative reaction to his feeding tube and is still only in the 2 percentile for his weight causing him to be classified "failure to thrive", the doctors, my sister and brother-in-law all agree that this is the best option for Elliot at this time.

The support that has been shown to my entire family has brought tears to my eyes countless times and has truly been nothing less than amazing. Thank you all for your continued support, thoughts, prayers, good vibes and well wishes for my nephew. We will be forever grateful.

If you have not done so already, I encourage you to share in Elliot's story. His journey was featured on Channel 4 news in Detroit. It helps to give a look into his daily life and the challenges he faces.  

http://www.clickondetroit.com/video/extended-cut-boys-rare-condition-means-he-cant-eat

Click here to learn more about Elliot's journey
+ Read More
Help spread the word!
 2.3K shares on Facebook
Update 3
Posted by Leah Carter
2 months ago
   Share
Day 8: We are outta here! I didn't want to post too soon for fear that I would jinx it, but we were officially discharged at 7:30am. Last night Elliot had one bout of vomiting and diarrhea but was fine the rest of the night. They discussed us staying 2 more days, but said if we felt comfortable we could still make the trip home as planned. We decided to head home and meet our home-care nurse and pharmacy at our house as planned. With that being said, we have lots of people excited to come see Elliot, but please make sure you and everyone in your household is healthy before doing so ☺️ A PICC Line comes with serious risks of bacterial bloodstream infections, which can be life threatening. We have to do daily temps and anything 100.4 or above means a mandatory, minimum 3 day hospital stay. Regardless if it's just an ear infection or common cold. They have to rule out bacterial infection and put him on IV antibiotics until blood cultures are final (48-72 hours). Today we are meeting the home-care nurse and the infusion pharmacy at our house at 2pm. Elliot is unhooked from TPN for the drive home so they will meet us there to get things rolling right away.

We have seen really good improvement over the past week and we are so hopeful that the TPN is getting us back on track. Elliot had weight gain in the hospital for the first time in a long time. He has so much more energy, is so much happier and so silly. It's pretty amazing to watch his little personality emerge. At the same time, it makes me so sad to know just how badly he was struggling. His dr made statements about Elliot's status this week that will stick with me forever. We do not know what the future holds in relation to Elliot eating, but for now we are hopeful that he is on a much healthier path. We want to thank everyone for your continued thoughts and prayers. Please keep them coming. We have a long road ahead, but it makes it easier knowing that Elliot's Army will walk it with us. Love to you all ❤️
Elliot asleep this morning before leaving to go HOME!
+ Read More
Update 2
Posted by Leah Carter
2 months ago
   Share
Day 2 in Cincinnati Children's Hospital: Hope everyone is doing well! Elliot is finally asleep so I just wanted to take some time to update on the last 2 days.

Last night (Monday) he was started on a low caloric concentration of TPN. About 1/3 of what his daily calorie requirements. Elliot's physician said because he is so malnourished we must increase slowly or we can actually make it worse. His labs came back solid today so his evening they bump the caloric composition up to 2/3 of what it needs to be. They will repeat labs in the morning and adjust according.

At this time, his team believes Elliot has something "bigger" than FPIES or MCAS. They feel those are just a "symptom" of the real issue. Blood has been sent out to check for rare auto-immune disorders, including Ipex. Those results will not be back for a couple of weeks. His GI, Dr Mukkada said the "Pie in the sky scenario" would be that we leave Elliot on TPN for minimum of 2 months, allow his GI tract to heal, allow him to grow and hopefully begin to pass foods/formula at that point. Wouldn't that be AMAZING!

With that being said...TPN is something that we are so grateful to have at this point. Regardless of how long he will be required to stay on it. We saw a change in Elliot today. He was HAPPY! Goofy, funny, smiling, flirting, independent, energetic, HAPPY! We had seen changes in him over the past 1.5 months that were so difficult to watch. The affects of his illness was taking a toll on him. Today...on just 1/3 of the TPN that is recommended...we saw a CHANGE! A positive change. His physician said you know just how malnourished they are when even the smallest amount makes a difference. Although TPN is not ideal and it has its own risks, we are feeling so grateful that we saw a glimpse of the "old Elliot" today ❤️ Truly made my heart explode with happiness. And it validates that we made the best decision for him.

As everyone noticed, Elliot had his NJ tube pulled today (nasal feeding tube). YAYYY!!! He still has his G-tube in his stomach and we will leave that in place indefinitely. There is no plan to remove that at this time. The rest of today was filled with education on how to care for his PICC Line and TPN and about 7437930 walks around the hospital in his wagon. We even got to sneak outside for a couple of minutes since it was so unseasonably warm!

Thank you so much to everyone for all of your thoughts, prayers, well wishes and generosity. We appreciate you so very much. Please just know that I am so overwhelmed with the love and support you have shown us. ❤️
+ Read More
Update 1
Posted by Leah Carter
2 months ago
   Share
Update (11/25): Hi everyone! We hope you had a great Thanksgiving! I wanted to quickly give an update. We received a call from Cincinnati Children's Hospital this afternoon to confirm our admittance on Monday morning. We will travel down to Cincinnati on Sunday evening and head to the hospital first thing Monday morning. They are hoping to get PICC Line inserted on Monday, but if not, it will take place on Tuesday and they will slowly begin TPN. I inquired about how long they expected us to be in the hospital for (I have heard rumor it is 7-10 days) She was unwilling to commit to a timeframe but stated, "Be prepared for more than just a few days." So this weekend I am going to spend as much time with our older children as possible. Putting up our tree, decorating the house, and doing our normal holiday prep. Just trying my hardest to maintain some sort of normalcy for them through all of this. Thank you so much for the amazing outpouring of love and support. We are absolutley blown away by the generosity that has been shown to our family. It truly means the world to us. I will continue to update throughout our hospital stay. THANK YOU again!
Love,
Leah (aka Elliot's mommy!)
Elliot says, "THANK YOU!" ❤️
+ Read More
Help spread the word!
 2.3K shares on Facebook
Read a Previous Update
Sara Jonathon Borchardt
2 months ago
2
2

I pray you have the energy left to reach out to myself or another pediatric chiropractor to insure his body is at full function in a place to heal in Gods speed. Love and light. I'm sure he's the sweetest boy. I can't wait to watch him grow!

+ Read More
LesleynTom Gonzalez
2 months ago
1
1

Can you please let us know how to donate breastmilk? I am currently dairy and soy free.

+ Read More
Lindsey Folendore
2 months ago
1
1

How do I help by donating my breastmilk? I'm currently gluten free and dairy free. I can cut soy also. It will take a couple few weeks for it to get out of my system. How do I go about donating my breastmilk?

+ Read More
Francie Williamson
2 months ago

Have you heard of EGID? This family has kids with it and they eat a special formula. http://insidecolumbia.net/2013/06/01/hungry-for-answers/

+ Read More
Jenna Johnson
2 months ago

I can't comment on the post on your fb page. I posted on my mom groups and there's someone who has some

+ Read More
Sara Tamames
1 month ago

Hi Leah! So sorry you are going through this with your little one! I just want to share with you that what is happening to your son is a common symptom of toxic mold poisoning. It has happened to me and several people I know. I was able to start eating again when I got away from the mold toxins that I had been exposed to. You can find more info here: http://www.survivingmold.com/ And here: https://www.facebook.com/groups/moldavoiders/?fref=ts I wish you all the best and I hope things get better soon.

+ Read More
Susan Cornelius
1 month ago

Sounds like it could be a eosinophilic disorder. Have you taken him to a really good immunologist? Most allergist immunologist wont be knowledgable enough to know about these complication immunological disorders.

+ Read More
Georgina Cracknell
1 month ago

Sounds just like my son, he's 13 moths old and can only have breastmilk at the moe. And chips and twiglets. That's all. He's got FPIES. And we've been told he will need tube feeding soon. I worry as hes been allergic to all prescfiptioj the formulas aswell. I'd love to find out more about mcas. I wonder if my boy has this too??

+ Read More
Maureen Storti
1 month ago

This is exactly what my daughter went through. She also has fpies. We were mentally and physically exhausted. Tried every formula out there, some of her triggers, dairy, chicken, rice, corn, and more. Vomiting 12 to 15 times a day. One day I decided to stop all formula and make my own, started a blended diet with only about 3 ingredients, she does have a gtube. Within 48 hours all vomiting stopped. But I feel you, good luck, and God bless

+ Read More
Kathy Michels
1 month ago

Please send the story and info to Dr. Afrin. He is one of the country's leaders in mast cell issues. Mast patients have a horrible time eating and some rely on tube feedings. He is at the Univ of Minnesota. This is a rare disease and many doctors and hospitals don't know much about it. He will consult with your local doctors. It might be worth a try since the little guy already has this diagnosis. Prayers and Hugs!

+ Read More
Adela Colmenares
2 months ago

I'm a mom struggling with two kids that have many food and environmental allergies. What I can tell you is to search for alternative methods such as energy medicine and homeopathy. I have used NAET for them and it has helped them tolerate more foods( there in a much better place). I hope and pray for you to find the answer you are looking for. God bless you and your beautiful child!

+ Read More
Danie Davis
2 months ago

Perhaps you could check out energy healing? Search on the internet for Dr. Bradley Nelson and The Body Code. I hope you find what you are looking for.

+ Read More
Kelly Vandenberg
2 months ago

My son was diagnosed with an auto immune disease when he was two, he is allergic to whey and gliadin, every dye, preservative, and nitrate...the AIP diet has helped tremdously along with coconut oil and avacado oil...look up the Goldberg clinic in Atlanta... I'm most certain they can help you!!! Know there is another mom warrior out there, fighting just like you❤️

+ Read More
Stefanie Colbert-Bruner
2 months ago

GAPS diet....prayers

+ Read More
Tina Powers-Yasaroglu
2 months ago

I urge you to reach out to the team at UNMC in Omaha - they specialize in pediatric intestinal issues. Which are rare. I know a young lady with a similar issue whose life was saved by this hospital.

+ Read More
Bev Barr
2 months ago

Please try CBD oil. Get knowledgeable about it, and find someone to consult. It couldn't hurt The body's cannabinoid receptors might be triggered and help click on responses to tell the brain to accept some foods.

+ Read More
Tiffany Goh
2 months ago

Elliot is such a brave little boy. It sounds like the root cause of his condition is related to his airway. The way we breathe and swallow significantly impacts overall health and our immune system. Children as young as newborn babies can develop incorrect breathing and swallowing habits that lead to "floppy" airways and a whole host of feeding and immune system issues. Fortunately, there are ways to correct this ! .. with myofunctional therapy. I think The Myobrace system could really help Elliot. I'm an Australian dentist and I've just attended a mind blowing course in the US with Dr Raphael in Clifton NJ. Perhaps you could get in touch with his office to see how they can help Elliot or refer him to a myobrace practitioner close to you. All the best ! I really hope Elliot gets on the right pathway to health soon

+ Read More
Carrie Plouff
2 months ago

I am a Vet Tech who has seen amazing results in specialty cases from homeopathy and integrative medicine. Most specialist won't refer to anyone outside of the Western medical field. I highly recommend doing your own research and consulting with an alternative specialist! I will keep your sweet boy in my prayers.

+ Read More
Cathy Cooper Beaton
2 months ago

http://hudsonalpha.org/smith-family-clinic-for-genomic-medicine-opens

+ Read More
Nicole Davidson
2 months ago

I know it sounds stupid, but I remember reading an article once about a girl who had a condition where she was allergic to every kind of food, and somehow they discovered she could eat Mc Donald's fries. She had a regular mcD's she would frequent and they would ensure no other cross contamination. Hopefully one day you can discover something for your boy to enjoy eating.

+ Read More

$27,141 of $30k goal

Raised by 433 people in 2 months
Created November 24, 2016
Leah Carter  
on behalf of Leah Carter
RB
$100
Rachel Blythe
1 day ago
SD
$25
Stacey Dunn
1 day ago
$20
Mariel Falk
7 days ago

Saying prayers for this sweet angel that the doctors will find the answers he needs! ❤

$10
Rhonda Koechig
7 days ago
$50
Anonymous
12 days ago
$100
Vickie Wybo-Yuhase
12 days ago

Leah and family, I am so sorry that you all are going through this. I am praying that somehow they find answers very quickly for all you.

$50
Rosalynn Newberg
13 days ago
PS
$100
Patricia Stewart
13 days ago

Offering prayers for your whole family. God bless you all.

GJ
$250
Greg Johnson
16 days ago
LL
$25
Lynn Lohmann
19 days ago

Love & Prayers to you and your family <3 God Bless you all

Sara Jonathon Borchardt
2 months ago
2
2

I pray you have the energy left to reach out to myself or another pediatric chiropractor to insure his body is at full function in a place to heal in Gods speed. Love and light. I'm sure he's the sweetest boy. I can't wait to watch him grow!

+ Read More
LesleynTom Gonzalez
2 months ago
1
1

Can you please let us know how to donate breastmilk? I am currently dairy and soy free.

+ Read More
Lindsey Folendore
2 months ago
1
1

How do I help by donating my breastmilk? I'm currently gluten free and dairy free. I can cut soy also. It will take a couple few weeks for it to get out of my system. How do I go about donating my breastmilk?

+ Read More
Francie Williamson
2 months ago

Have you heard of EGID? This family has kids with it and they eat a special formula. http://insidecolumbia.net/2013/06/01/hungry-for-answers/

+ Read More
Jenna Johnson
2 months ago

I can't comment on the post on your fb page. I posted on my mom groups and there's someone who has some

+ Read More
Sara Tamames
1 month ago

Hi Leah! So sorry you are going through this with your little one! I just want to share with you that what is happening to your son is a common symptom of toxic mold poisoning. It has happened to me and several people I know. I was able to start eating again when I got away from the mold toxins that I had been exposed to. You can find more info here: http://www.survivingmold.com/ And here: https://www.facebook.com/groups/moldavoiders/?fref=ts I wish you all the best and I hope things get better soon.

+ Read More
Susan Cornelius
1 month ago

Sounds like it could be a eosinophilic disorder. Have you taken him to a really good immunologist? Most allergist immunologist wont be knowledgable enough to know about these complication immunological disorders.

+ Read More
Georgina Cracknell
1 month ago

Sounds just like my son, he's 13 moths old and can only have breastmilk at the moe. And chips and twiglets. That's all. He's got FPIES. And we've been told he will need tube feeding soon. I worry as hes been allergic to all prescfiptioj the formulas aswell. I'd love to find out more about mcas. I wonder if my boy has this too??

+ Read More
Maureen Storti
1 month ago

This is exactly what my daughter went through. She also has fpies. We were mentally and physically exhausted. Tried every formula out there, some of her triggers, dairy, chicken, rice, corn, and more. Vomiting 12 to 15 times a day. One day I decided to stop all formula and make my own, started a blended diet with only about 3 ingredients, she does have a gtube. Within 48 hours all vomiting stopped. But I feel you, good luck, and God bless

+ Read More
Kathy Michels
1 month ago

Please send the story and info to Dr. Afrin. He is one of the country's leaders in mast cell issues. Mast patients have a horrible time eating and some rely on tube feedings. He is at the Univ of Minnesota. This is a rare disease and many doctors and hospitals don't know much about it. He will consult with your local doctors. It might be worth a try since the little guy already has this diagnosis. Prayers and Hugs!

+ Read More
Adela Colmenares
2 months ago

I'm a mom struggling with two kids that have many food and environmental allergies. What I can tell you is to search for alternative methods such as energy medicine and homeopathy. I have used NAET for them and it has helped them tolerate more foods( there in a much better place). I hope and pray for you to find the answer you are looking for. God bless you and your beautiful child!

+ Read More
Danie Davis
2 months ago

Perhaps you could check out energy healing? Search on the internet for Dr. Bradley Nelson and The Body Code. I hope you find what you are looking for.

+ Read More
Kelly Vandenberg
2 months ago

My son was diagnosed with an auto immune disease when he was two, he is allergic to whey and gliadin, every dye, preservative, and nitrate...the AIP diet has helped tremdously along with coconut oil and avacado oil...look up the Goldberg clinic in Atlanta... I'm most certain they can help you!!! Know there is another mom warrior out there, fighting just like you❤️

+ Read More
Stefanie Colbert-Bruner
2 months ago

GAPS diet....prayers

+ Read More
Tina Powers-Yasaroglu
2 months ago

I urge you to reach out to the team at UNMC in Omaha - they specialize in pediatric intestinal issues. Which are rare. I know a young lady with a similar issue whose life was saved by this hospital.

+ Read More
Bev Barr
2 months ago

Please try CBD oil. Get knowledgeable about it, and find someone to consult. It couldn't hurt The body's cannabinoid receptors might be triggered and help click on responses to tell the brain to accept some foods.

+ Read More
Tiffany Goh
2 months ago

Elliot is such a brave little boy. It sounds like the root cause of his condition is related to his airway. The way we breathe and swallow significantly impacts overall health and our immune system. Children as young as newborn babies can develop incorrect breathing and swallowing habits that lead to "floppy" airways and a whole host of feeding and immune system issues. Fortunately, there are ways to correct this ! .. with myofunctional therapy. I think The Myobrace system could really help Elliot. I'm an Australian dentist and I've just attended a mind blowing course in the US with Dr Raphael in Clifton NJ. Perhaps you could get in touch with his office to see how they can help Elliot or refer him to a myobrace practitioner close to you. All the best ! I really hope Elliot gets on the right pathway to health soon

+ Read More
Carrie Plouff
2 months ago

I am a Vet Tech who has seen amazing results in specialty cases from homeopathy and integrative medicine. Most specialist won't refer to anyone outside of the Western medical field. I highly recommend doing your own research and consulting with an alternative specialist! I will keep your sweet boy in my prayers.

+ Read More
Cathy Cooper Beaton
2 months ago

http://hudsonalpha.org/smith-family-clinic-for-genomic-medicine-opens

+ Read More
Nicole Davidson
2 months ago

I know it sounds stupid, but I remember reading an article once about a girl who had a condition where she was allergic to every kind of food, and somehow they discovered she could eat Mc Donald's fries. She had a regular mcD's she would frequent and they would ensure no other cross contamination. Hopefully one day you can discover something for your boy to enjoy eating.

+ Read More
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now

Pledge now, give later.

Pledge Now
You won't be charged for this pledge. We'll let Leah know that you have pledged support.
Thank you!
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.