Kaylee | October 2016

Kaylee’s daddy is a teacher. Her mom takes care of Kaylee and her little brother full-time and works part-time, when she can, to bring in extra money. The family’s formula bill is more than twice the amount of their monthly mortgage.

Kaylee has FPIES. Her little brother Elliott has a cow milk allergy and is suspected to have FPIES as well… At this point he is too young to positively diagnose. Both Kaylee and Elliott are on amino-acid based formula.

Kaylee is on Neocate Junior. Through the Fund, CMNuA was able to provide Kaylee with 10 cases of formula.  Additionally,  a previous recipient of The Fund also generously donated several cases of formula to Kaylee’s family.  What these families go through is so difficult. We are so happy to be able to help.

Kaylee’s Mom Amber probably describes their life best and highlights why we at CMNuA are honored to be able to help in any way we can. Exerts from a letter she sent us are below.

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Kaylee’s mom, Amber writes, “(Around four months old) our allergist  uttered a phrase that has changed our lives; “I think your daughter has FPIES”…(and) gave us a sample can of amino acid-based formula to try. Within three days of introducing the formula — I had a totally different child.

Once we started solid foods we realized how sick she really was…Kaylee’s first acute reaction occurred after putting a marker with soy ink in her mouth at her babysitter’s house. She threw up 27 times in three hours and then started to go into shock from loss of fluids. Things can get scary fast with FPIES.

Today, Kaylee is 17 months old. She only has seven safe foods: pork, spinach, pomegranate seeds, peanut butter, tomatoes, almonds, and butternut squash. All of those foods are newly safe since September. She still drinks 40 ounces of formula a day because she doesn’t have enough safe foods to constitute complete nutrition or get her the amount of calories she needs.

Our life looks different with FPIES than it does for most people.  We keep a bag packed with hospital clothes for all of us and an ER letter for Kaylee describing what to do if she has ac acute reaction. We have to trial foods one at a time so that if there’s a reaction we know what caused it, and everything Kaylee eats is made at our house where the utensils aren’t cross contaminated and the ingredients are all safe foods.

Sometimes we lose safe foods when Kaylee has been sick or when she gets a round of shots and her immune system gets low. When that happens I have to stop giving her safe foods and go back to just formula because otherwise we will lose ALL the safe foods we have.

Despite all of this, my kids are still healthy and thriving on formula and we are very, very blessed to have a great team of doctors helping us. The light at the end of the tunnel is that both kids should outgrow FPIES and hopefully they won’t remember any of this.

We are so grateful for the amazing people at CMNUA and all their help. They approved us for help with formula when insurance wouldn’t and we didn’t qualify for WIC. Right now we spend about $1,500 per month on formula, which is more than double what our house payment is, so every bit of help and support like we received from CMNUA is so valuable. I can’t say thank you enough.

Thank you for supporting the fund and helping bring awareness to issues like FPIES so that my kids and others just like them can get the help they need to stay healthy.”

If you’re interested in hosting a fundraiser in support of CMNuA’s mission, please contact lendress@cmnua.org.