Medical Bills, Healing

$30,046 of $35,000 goal

Raised by 341 people in 66 months

Meet Kayla Marie. She is a beautiful, fun, feisty 10 year old with a very rare genetic disorder. Kayla has APS Type 1-Autoimmune Polyglandular Syndrome Type 1. What is that you may ask, well here goes......Kayla's body attacks itself, more so, her endocrine glands and organs, like kidneys, thyroid, parathyroid, lungs, adrenals, etc. There are only maybe 100 cases of APS1 in the United States. This disorder is progressive, and there is no cure. There is only testing, medication, prevention as much as possible, and maintenance once something shows up.  Kayla is the 29th person being researched in the U.S.A. at the National Institute Of Health with this extremely rare condition, and the 6th with the Autoimmune lung involvement.
Kayla is a beautiful, amazing child with such a fire for life, and wants so badly to be just like every other normal kid out there, but unfortunately that is not possible.  Her body is just too sensitive, and she is susceptible to every germ in the world.  Kayla was diagnosed with APS1 in Decenber of 2009 during a 6 week hospital stay.  Every year since we have been faced with new challenges, some years much more than others. 

 The main symptoms of her disorder are:

1) Primary Immune Deficiency-her body has a very weakened immune system-SHE RECEIVES IVIG(HUMAN IMMUNOGLOBULINS) EVERY 3 WEEKS TO KEEP HER IMMUNE SYSTEM BOOSTED AND HAVING THE ANTIBODIES IT NEEDS TO FIGHT OFF INFECTION

2) Selective Antibody Deficiency- she does not produce antibodies to many illnesses and diseases 

3) Autoimmune Bronchitis/Autoimmune Pneumonitis-her body is attacking its own lungs which causes lung damage and pneumonia with bacteria that should never be in the lungs--SHE HAS BEEN ON 3 DIFFERENT IMMUNOSUPRESSION MEDICATIONS TO SUPRESS t CELL COUNT  AT THIS POINT TO KEEP THE LUNG DISEASE FROM PROGRESSING.  2 HAVE  STARTED WORKING THEN FAILED, WE ARE NOW ON THE 3RD, AS WELL AS HAVING DONE 2 ROUNDS OF A CHEMOTHERAPY DRUG TO SUPPRESS HER b CELL COUNT

4) Hypoparathyroidism--which means her body does not produce and absorb calcium properly. Calcium plays a key role in most parts of your body like your electrical function so when her calcium falls to low she starts to twitch, cramp up, seize, etc.
 

5) Autoimmune Hepatitis--her body has been producing antibodies to her own liver causing inflammation and scarring of her liver

6)Iron deficiency and Anemia-her body does not absorb certain elements properly and iron is one of them and she is now anemic secondary to that-SHE GETS IRON INFUSIONS EVERY 3 WEEKS AS MAINENANCE

7) Growth Hormone Deficiency-her body produces no growth hormone and she has been to the -5% on the growth charts.  She is finally on GH replacement injections daily and is slowly increasing in size and weight. 

8) Chronic Candidiasis- systemic yeast, from mouth, gut, lungs, etc.  

9) Bronchiectasis and Asthma--a lung disease which causes chronic dilation of the bronchioles--leaving Kayla prone to recurrent pneumonia

10) Recurrent Pseudomnas Pneumonia-she has a chronic bacteria in her lungs that causes pneumonia

11 Alopecia Areata--she has thinning all over her head, had one major bald spot in back of head finally grown back in a year later.

12) Ectodermal Dystrophy and Enamel Hypoplasia-this affects her teeth and nails.  Her teeth are very soft and weak secondary to this and the lack of calcium in her body.  She also has only 2 normal fingernails left, and the rest are very disfigured.
AT  THIS POINT IN TIME KAYLA'S FINGERNAILS HAVE GROWN BACK IN NORMALLY.  THANK GOD!

Kayla spends one full day every 3 weeks getting her infusions and treatments at Joe DiMaggio Children's Hospital.  In the long run there are numerous other illnesses and disease states that we have to watch and monitor for.  Addisons Disease is another main symptom that Kayla as of now does not have, but that can change at any time.  She could end up with ovarian failure, diabetes, blindness and so many other debilitating manifestations.  
Kayla is on hospital homebound, and cannot go to a traditional school setting. With a weak immune system and lung disease,  something as little as a cold could make her sick for months, and any sickness can cause more lung damage.  
Our out of  pocket expenses for her medical care range from $600-$1000 monthly, all of which I cannot afford.  I am a single mother, unable to work much because I must stay home and take full time care of Kayla.  I am her nurse, teacher, her Physical Therapist for lung therapy,  as well as her mother.   We have doctor appointments,  lab work, scans, tests, acupuncture,  and infusions to get to weekly.   Also, make trips to the National Institute of Health in Bethesda, MD several times a year to keep up with the research.  We have spent a month there in the hospital at one point while we started her chemo, as well as numerus hospitalizations at home, and in home nursing and treatments at times. 

Please help me to continue to get what my child needs, we are finally receiving some help from the state and government, but not enough to survive or get her what she needs.  Please help us in anyway that you can.  Even if all you can do is say a prayer and share her story.  I know in my heart by sharing this and getting the information out there we will get by and get what we need.  I just have to kep fighting and pushing every day.  So many days I feel like I cant push anymore, but you seem to muster up strenghth from where ever you can find it and keep pushing through.  
I want my Kayla to be able to know what a happpy fun filled life is, not one of all pain, needles, and doctors, please help me provide this for her.  Many blessigs to you all.
No child should have to live their lives chronically sick, please help me to give my baby the best life possible.  

Here is the link to her Facebook Page is anyone would like to join, just copy and paste in browser.

https://www.facebook.com/groups/205387116327254/

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Well Ms. Kayla's surgery last week was a success. They were able to remove the big piece of port catheter that was stuck in front of her heart without any complications. Thank God!!! Her lungs are looking really good at this time as well. Now that we have that major issue behind us we can focus on other things at hand. Still working on getting the insurance to approve her estrogen patches to treat the Ovarian Failure. The estrogen will help get her body out of having menopausal symptoms, and will eventually kick start puberty. Without the patches this will not happen. Eventually she will need progesterone supplementation as well. These hormones work hand in hand with other endocrine hormones that also help her growth and several other things. So this is a multi-faceted issue. Not just that she will not have biological children. She is at the hospital for her regular treatments. She finally gets a week of no doctors appointments or treatments next week. After that we are at the hospital for the next 5 subsequent Thursday's to start her next round of her B cell chemo Rituximab and do her regular treatments. She is already scheduled to go backup to DC to the NIH to see her research team again exactly one month after starting treatment. So we are scheduled to fly out August 25th for a couple days. We will go back again at the 6 month point, around January 25th. Hoping that time we can do her full research protocol instead of heading back up there again in May. After that, September 9th, she finally gets her week long dolphin therapy trip. With everything that happened since April, that's gonna be a well needed and deserved trip for her and myself. We are dealing with her having panic attacks and bad anxiety again since this last surgery. But it is to be expected at this point. All of these experiences are traumatic for her. Every surgery, procedure, being under anesthesia, it all does a number on her. Just grateful we are learning how to navigate and understand more when she starts to get like this. We so very much appreciate the donations since the last update. Were having the yard sale July 20th to continue to raise the rest of the funds for the accommodations for her dolphin trip. And we also have some out of pocket expenses with these upcoming trips back to DC. They cover our flights and the majority of our hotel cost, but not all of it. We also have to pay out of pocket for our food and some transportation on these trips. And it is a lot of extra time off work for me. Please continue to share this and pray from my kiddo and we thank you all so much for continuing to support her on her journey!
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Well, it's been a while since I've done this. Here's a little Kayla update. Since I last posted lots has been going on. Kayla had her sinus surgery last August, and not long after the horse she was taking care of had to be put to sleep, which was devastating to her. She dealt with several minor issues with immunosuppression, pain, and blood pressure for the next several months. But, luckily, no major illnesses. This is the first year of her life she has made it through cold and flu season unscathed. She caught a few upper respiratory infections. But nothing turned into anything major. Thank God. In the past 2 months we have encountered some challenges. Shortly after Kayla's 12th birthday we found out her ovaries have now failed and she has Primary ovarian failure. A few weeks after that she had surgery to remove her port, as it hadn't been working properly for a while. During the surgery there were complications and the port broke into pieces and a part of the part catheter remains stuck inside blood vessel near her heart. We had planned surgery for the end of May to remove the piece of catheter that a stuck inside of her, but Kayla got very sick for a few weeks with a bad upper respiratory infection. Surgery was cancelled and rescheduled for the end of June now with a bronchoscopy at the same time to get samples from inside of her lungs. This last virus did a number on her very fast. Last week we received a call from the NIH and Kayla and I went back up there just a few days ago for a quick visit and we just got back. Kayla's lungs are looking very good right now, she needs another round of Rituximab soon, so we will be working on that. We also met with the endocrinologist on our team up there and spoke more about her ovaries. She said she's afraid that Kayla's infertility is permanent being that her egg reserve is zero and her other reproductive hormones levels are so off. She's having menopausal like symptoms and will be starting hormone replacement therapy soon, which should help those symptoms go away, and help her go into puberty. She said Kayla will one day be able to carry a baby to term using donor eggs and hormonal support. This new diagnosis has been one of the hardest ones to digest as of yet. As a woman, this is what we are genetically made to do, reproduce. Finding out my daughter cannot do that is devastating. We are awaiting her next surgery and procedure, and going to get things coordinated here for her next round of rituximab. We will have to go back to NIH one month, and 6 months after this next round. With her being so healthy these past several months I havent had to fundraise much at all, as I have been able to work and not miss too much time. But now, I have missed a bit of work last month with her being sick, and will miss more this month with surgery, just going to NIH, and then more chemo coming up too. We are also planning a yard sale in July to raise money for her medical fund and the accommodations for her dolphin therapy trip this September. We got the donation turned in for her and the rest in scholarship. That is set for Sept 9th. After all this going on that will be a well needed experience for her. We are just so grateful she is feeling better, lungs are doing so well, and soon these complications will be behind us. Thank you all for continuing to support my Angel. Much love ❤
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So here is a little Kayla update. The past several weeks have been rough for her. She had her mouth surgery at the beginning of the month. Since then she has been having a lot more symptoms from repetitive trauma and PTSD. Going under anesthesia can trigger these symptoms. She had her first panic attack when we were back at the NIH in May. They had taken her into an ICU room for a test and just being put in that environment, where she had the major trauma and subsequent surgeries, took a huge toll on her. We are putting off her sinus surgery till the middle of August to give her some time to decompress from this now.
We received a huge blessing recently and Kayla has the opportunity to learn to take care of and love a horse. His name is Amos. But there have also been some challenges with her doctors regarding this. Her doctors are very concerned with her being in this environment around bacteria, fungus, hay, and horse droppings. We're working on Solutions and currently Kayla has to wear N95 surgical grade filtration masks anytime she's around the horse or in this environment. She has already bonded with this animal so beautifully. So we're doing everything possible to make sure the two of them can continue to work together.
We're still having issues with her T-cell suppressant level, as it's not coming up to where they need it to be. Her pain levels have increased, but this could be due to the drug or the PTSD. It's very hard to tell.
It's so difficult as a parent to watch your child struggle and be so limited as to what you can do to relieve their pain. When it's something physiological, an illness, something you can see, it's easier to manage and understand it's healing. When the wound is in the spirit in the mind, it is hard to gauge the healing. We are doing our best and working with Kayla's therapist to get her in a better space right now.
I have her next painting party set for September 15th as we are completely out of funds for her medical care. I have just enough left for next month to get her meds. She has needed a lot more acupuncture, massage and craniosacral therapy lately. I will more than likely do a yard sale next month too. Also working my hardest to collect donations for her dolphin trip and get that date set for sure and in motion. Kayla needs a break and something to look forward to and that vacation will provide it. I'm constantly grateful for all the help we receive from all of you. Thank you so so much for supporting Kayla and myself through this not so easy journey. Much love and many blessings to you all.
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Hey all, here's a little Kayla update. Things have been going nonstop since returning from her research trip. Our week in Bethesda at the NIH was good, but also difficult. Things have not slowed down much since getting back. Right back to doctors, physical therapy, infusions, and now she has gotten sick. She is nursing a terrible sinus/ear/upper respiratory infection, and they are also treating the MRSA in her sinuses. She got a good report at NIH and her lungs look good. We have been working on some issues since getting home. It has been determined that her T Cell suppressant level, the oral chemo, is no where near in a therapeutic range. She is one of a handful of patients on this drug. Her research team now knows from more research and speaking with colleagues that use this drug from other purposes, that her levels need to go up. That means we have to give her more of the drug. The problem with this is the research team has also determined this is the drug that is more than likely causing all the pain she's having. We are slowly increasing her Doses and documenting pain and blood pressure symptoms daily to see if we can get her levels from a 2.0, up to where they want them between 5.0 - 8.0. This is a large increase, so we go slowly and wait to see what side effects show up. She is already on a lot of pain meds, CBD oil, and neurotin daily, and we don't want to have to keep giving her more. Also hoping we don't see anything like we saw with the last two drugs, with the nosebleeds and the headaches. The pain issue is difficult enough to manage. If things get worse with the pain we will switch to another new experimental drug. We were planning to redo her b cell chemo in October before cold and flu season, but she needs to be stable on the t cell drug before we can do that.
I am currently working with the school board and a lawyer, and an advocate to try and get Kayla's schooling improved. Things are in the works and we'll see if what we've come up with for now works starting next year, and if not will go forward with legal action and work on getting her private personal teacher through the county.
We've also recently found out that Kayla will not be able to go to Camp hole in the wall this summer with a couple other girls she knows with her diagnosis. This has honestly made her very sad, as she was looking forward to this experience very much. I'm working my hardest to ensure that we get donations to Island Dolphin care to secure her trip there and not just rely on the scholarship if they have it available. She and I both definitely need a break and a vacation. And she desperately wants to go back to swim with the dolphins. We need donations there, as well as raising money for the accommodations for the week long trip. She is at Joe DiMaggio today getting her tune up, and doing some stuff to see if we can get her port to work properly or not. She has not had blood return from it in a couple months. The next step with the port ig it doesnt work today will be consulting with the surgeon to see if it needs to come out and be replaced. She also has a big dentist appointment next Monday to schedule all her dental work that needs to be done surgically at the hospital under sedation. After that it's back to the plastic surgeon at the end of the summer to schedule the wound revision surgery on her arm from the calcium line. It's never a dull moment my friends, but we keep pushing on. Please send her love and prayers that she gets better from this upper respiratory right now and can enjoy her summer, and get Summer School done. Thank you so much for all the continued love and support. Much love to you all.
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$30,046 of $35,000 goal

Raised by 341 people in 66 months
Created February 4, 2014
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$50
Jen Bock Barrett
17 days ago

Praying for you both.. I can't wait for you to have the dolphin trip!

$50
Sharon Ann
1 month ago
SC
$50
Stephen/Karen Carey
1 month ago

Keeping you both in our thoughts and prayers!

EM
$100
Elizabeth Mathew
1 month ago

Praying for you and Kayla, Amy.

JL
$25
Jacqueline Lowe
1 month ago
SC
$50
Stephen and Karen Carey
11 months ago

Continued positive thoughts and prayers!

$40
Charmaine Bellefeuil
13 months ago

Love and prayers from Layla and her Grammy Char.... XOXO

$100
Anonymous
13 months ago
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