Kara's support fund

$970 of $5,000 goal

Raised by 15 people in 19 months
Tylor Kennedy
on behalf of Nichole Lang
 LINCOLN, NE
I would like you to meet Kara Lang, she is 10 months old and has been diagnosed with several medical conditions. They are: FPIES - Food Protein Induced Enterocolitis Syndrome which occurs in 0.3% of the world's population, Bifid Uvula (which causes her feeding issues and speech concerns) occuring in 10% of the US population, IgE allergies (we carry Epi Pens everywhere for our sweet baby), and CSID - Congenital Sucrase Isomaltase Deficiency affecting 0.2% of the world population. Her severity of CSID has never been seen by her GI or Allergist. She also has GERD - Gastroesophageal Reflux Disease, which is fairly common, but without medications can cause permanent damage. Due to her FPIES and CSID there are no safe medications for her. Same with pain meds, etc: Zero safes. When she hurts, we can do  nothing medically to comfort her.  Finding providers to help her is difficult, as there are only a handful in the country that even know FPIES exists, let alone how to manage it. Especially with her other rare conditions.

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     FPIES is a syndrome in which the person is allergic to food proteins and its derivatives. For example, Kara is FPIES to soy. So not only can she not have foods with soy in it, but no medications either. She can also have a reaction from contact so we have to be careful about what she touches, from the soap we wash her bottles in, to the lotion we use, to the ink print on her books, (she's a typical infant and likes to suck on them), etc.  An FPIES reaction causes repeated vomiting, bloody diarrhea as the GI tract is damaged, lethargy, and rashes/hives. If not treated immediately the body goes into shock. 
     Each person with FPIES has different food triggers. There is no testing for FPIES, or each individuals safe foods, so the only way to find out if a food is safe is to feed it to her. Right now Kara is going though food trials to find out what ones are safe; they consist of presenting her with the food, then waiting. She touches the food, or even swallows a few bites and we wait. Within the first few minutes we wait for signs of an IgE reaction, one that could make her stop breathing in seconds. We wait for signs of an acute FPIES reaction, one that could put her into shock, her heart stopped. After the first few minutes we watch the clock slowly tick past the 4hr mark, the point at which an acute reaction should have happened. Then we sigh a big sigh and continue to wait. With each new exposure (twice a day) we start all over again, and we do this for at least 3 days. After 24hrs we also start the clock looking for signs of a chronic reaction, one that looks mild on the outside but is destroying her GI system on the inside; one that could end up causing the same situation as an acute reaction. After 3 days, we breath a little easier, we usually know a pass or fail by now. But FPIES has no rule book, so we continue to wait and see what it has in store for us this time. If all goes well we get 4 days of calm. Then it's time to trial a new food. Right now she has 3 safe foods and 16 known allergies.

As you can imagine there are a lot of bills that come along with this, and much of our expenses are not covered as there is no medical billing code for FPIES yet, because it is a newer diagnosis with almost no research behind it, so insurance can and does deny a significant amount.  $5,000 would make a small dent in the bills but if we could at least get to that point then no less than 50% of any other donations would go to the FPIES Foundation to help with research and helping other families.

The FPIES Foundations theme this year is "Be The Voice", and it refers to increasing awareness of the syndrome. Thank you for taking the time to read our page, and even if you are unable to donate please consider sharing Kara's page or information with others so that you, too, can Be The Voice :)

www.fpiesfoundation.org
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Update 6
Posted by Tylor Kennedy
15 months ago
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Kara is having weekly PT evaluations, and her therapist is happy with her improvements. She has a long way to go, and may always need some sort of assistance, but she is gaining confidence in her abilities which is so good for Momma and Dada to see! She loves to show off her dancing and backwards walking skills :)

Kara is currently trialing lamb. This would be an exciting pass, as it is her first meat. She is working hard in feeding therapy to learn proper chewing skills, and the texture of meat is beneficial to this, as well as to her texture aversions.

She recently went through a rough patch fighting bronchitis and double ear infections. After antibiotics (reaction? you bet! But not as bad as it could have been) and inhaler treatments she has healed. She also recently had a mast cell reaction that warranted a change in medications.

We have found a new allergist for Kara, with the hopes that his increased knowledge in the areas of FPIES, Mast Cell, and IgE will further help us in her care. We have a good feeling about him, hopefully it hold true :)

Thank you for your continued support, thoughts, and prayers. Our little fighter and her family truly appreciate them!
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Update 5
Posted by Tylor Kennedy
16 months ago
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Kara had an evaluation by a Physical Therapist today. She gave her the unofficial diagnosis of Ehlers-Danlos Syndrome (EDS). An official diagnoses would require genetic testing, and since it wouldn't change her treatment course we have chosen not to pursue that at this point. EDS is a rare connective tissue condition that causes hypermobility of joints. Kara's ankles are affected, making walking difficult. She has an appointment next week with an Orthotist to be fit with either a splint or brace for her feet/ankles.

Feeding therapy went well today. She is now occasionally mashing food on her palate with her tongue, which is a step towards her goal of chewing in the back of her mouth. Right now she chews in the front only, which is not appropriate :)

Just for fun, here's a list of Kara's current diagnoses. 4 out of 7 are classified as rare:

FPIES
CSID
MCAS
IgE Allergies
GERD
EDS
Dysphasia

Since the last update, Kara has failed yellow squash, passed Kiwi, and is currently trialing pears. She is not impressed with them :)

Thank you all for your continued support, thoughts, and prayers!!!
Happy Holidays!

~Kara's Momma
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Update 4
Posted by Tylor Kennedy
16 months ago
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Where do I start? Since the last update Kara has passed her retrial of peanut butter, her antihistamine, and her second flu vaccine with minimal reactions. Her doctors still don't know why she reacted to the vaccine, but that's our Kara :) She failed her egg trial.
We recently had testing done because Kara has symptoms of a rare mast cell syndrome. We received the results today: she has Mastocystosis. Which subtype per se is up in the air (my heart knows its MCAS, but further testing would be necessary and wouldn't likely change current treatments). Long story short-ish: She can have abnormal histamine responses, ranging from hives to anaphylaxis or shock, to anything; foods, air temperature, scents, etc. At this point we know she is reacting to her FPIES safe foods but are not certain of her other triggers, and we may never know all of them. Our current hope is that with treatment she will be able to once again tolerate her FPIES safes, have a safe environment, and that she will outgrow this by adulthood. There is no cure, only treatment, so please pray and send good vibes that we will be able to properly and safely manage her symptoms. Thank you for your continued support!
~Karas Momma
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Update 3
Posted by Tylor Kennedy
17 months ago
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Our little fighter turns ONE next week! And what a year it has been; full of challenges but each one worth it.
Kara spent last week sick, and this week with a reaction to the contrast medium used for her modified barium swallow study. We knew she would react, she did last time, but it was necessary to determine the next steps in therapy. She has started choking on feeds again, so we needed answers. The bad news is that we dont know EXACTLY whats going on, but the good is that her providers seem to think continued therapy will help.
A doctor was present for the test for safety concerns in case of an acute reaction. I was frustrated to learn that although the hospital set this up, the doctor had never even heard of FPIES. We NEED to get the word out, we all need to be the voice! Please help us do this :)
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$970 of $5,000 goal

Raised by 15 people in 19 months
Created September 23, 2015
Tylor Kennedy  
on behalf of Nichole Lang
$100
Anonymous
16 months ago
1
1
$250
Anonymous
16 months ago
1
1
RW
$20
Roger W
18 months ago
1
1

Hang in there, kid

DQ
$20
Don Quixote
18 months ago
1
1
MO
$100
Matthew O'Neil
18 months ago
1
1

Peace be with you.

JV
$50
J Voight
18 months ago
1
1
SR
$20
Stephen Roberts
18 months ago
1
1
LP
$50
Leanne Provenzano
18 months ago
1
1
LR
$10
Linda Riley
18 months ago
1
1

Best to you, pretty baby

GF
$50
Gregg Finver
18 months ago
1
1

Hope this helps -some guy who kinda knows your uncle online

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