Gianna

Following a lengthy 30day in the ICU, with a diagnosis of Food Protein Induced Encrolitis, Gianna was prescribed the formlua Elecare. This came at a substantial cost for her family.

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Lily Jo, Age 6

I just want Lily Jo to be able go to school and eat lunch like the rest of the children. I want to know that once again someone doesn’t understand or miss read the list of instructions for the food

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Zoë and Stella

We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the cost to provide both of them with adequate medical foods was so intense, especially during the picky

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Raelyn, Age 3

My daughter was born with PKU and our world was flipped upside down to say the least. I fought with our insurance company for months, we have “good” insurance, and yet they still they don’t see this as necessary. Having

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Gannon, 8 months

Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we elected to enroll in our states children’s special illness healthcare program. It costs us about 150.00 a month

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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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Bethany, Age 19

Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it

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Zach, Madie, and Kai (14, 11, and 5)

Having three children with PKU is an unbelievable blessing. We had never heard of PKU before Zach was born and just a few days after he was born, we were thrown into the deep end of the PKU life. When

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Allen

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought up in tremendously positive circumstances and have the ability to partially cover my medical necessities. Some

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Nicole

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without coverage for medical nutrition it is virtually impossible to be compliant with my diet. When I cannot

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Nicholas, Age 3

Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.

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Piper, 2

I had never heard of PKU until my two-year-old granddaughter was diagnosed.  Fortunately, the state of Michigan pays for her medical formula, but nothing towards all the low protein foods that are required. Medical formula is covered by state of

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Elliott, 1 month

To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either.

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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.