Elliott, Age 6

Elliott was diagnosed with Homocystinuria, or HCU, at 2 years old after suffering a series of blood clots throughout the brain. Once diagnosed, we immediately began treatment, which consists of a very low protein diet, medical formulas, Vitamins B6, B12

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Samantha

I began my last semester of college excited for the year ahead, doing normal things for a college senior, thinking about life after graduation and hanging with my friends. I was looking forward to my last performance of Step Sing,

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Grayson, Age 2

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands employment and Medicaid do not cover compounded medication. Without this medication he would suffer from seizures, brain atrophy, vision loss,

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Leah, Age 12

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters medical formula. This is a need, that comes accompanied by multiple letters of medical necessity from

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Kelly

My name is Kelly and I was born on October of 1989. I appeared to be a perfectly healthy baby, the youngest of three, to loving parents and two wonderful older brothers. I appeared to be just another little girl

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Joanna

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally thought it was Marphan’s Syndrome but upon looking at my eyes closer they found out it was Homocystineuria. I

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Joseph

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our coverage keeps changing and it appears to be at the whim of the insurers. We need to

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Danae

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the diet while trying to afford rent, utilities, tuition, health insurance, other medication, car insurance and other bills.

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Ellie

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they are producing enough milk or getting enough formula, we were in the NICU

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Pamela

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very late in life. I have suffered from strokes and blood clots in my lungs because of it.

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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.