By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.
Read moreTexas
Mayes, Age 4
Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was labeled as failure to thrive, experienced daily pain, and yet, lived each day with
Read moreSienna, Age 22
When my daughter Sienna was 3 months old she was diagnosed with a rare metabolic disease called mma-cblc. This disease prevents her from processing b-12 correctly or breaking down protein correctly. She was in the NICU & very critical before
Read moreElijah, Age 7
Insurance won’t cover my son’s formula unless he’s tube-fed.
Read moreSutton, Age 4
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the
Read moreMelissa, Age 26
I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to my unborn child. Having coverage for my medical nutrition would be financial
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Pat and Issac
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot
Read moreAndrew, Age 18
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a Medicaid waiver program, as they try to kick me off the program frequently. All of this and
Read moreWill, Age 12
This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does not help with procuring formula. Why do we pay so much for so little?? Why have
Read moreAdysen, Age 11
Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to cover it on a month by month basis. She is on one required medical food but uses two
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Anthony, 1
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town,
Read moreDraegen, Age 18
When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it.
Read moreMaeve, Age 8
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been diagnosed with a rare metabolic disorder requiring a strict medical diet in order to prevent
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