T, Age 5

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.

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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

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Sienna, 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

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Sutton, 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

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Melissa, 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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Hudson

While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with the cost of providing nutrition for our son. Additionally, the stress and anxiety over his future

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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

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Andrew, 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

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Will, 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

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Adysen, 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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Andrea

I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All throughout my pregnancy I was able to receive medical food coverage from my

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A. Jay

It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will only cover his formula if he doesn’t eat any food. Otherwise, they say it is not medically

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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,

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Draegen, 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.

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Maeve, 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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John

I have avoided purchasing the medical food I needed because we can’t afford the food.

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Les

These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar metabolic disorders. They are like insulin for a diabetic. I cannot walk into a GNC and buy formula off the shelf.

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Zoey

For now while she is a baby our insurance covers some of her formula, but none of her medically necessary supplements and none of the formula or low protein food when she is older. She will never have chic-fil-a with

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.