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Asher, 4

Illinois · Phenylketonuria (PKU)
Annual cost: $1800

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...

Will, Age 12

Phenylketonuria (PKU) · Texas
Annual cost: $12000

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...

Walker

Georgia · Phenylketonuria (PKU)
Annual cost: $5400

Having full and mandatory coverage would release a lot of strain on our annual budget and give us peace of mind. Trying to get ...

Maeve, Age 8

Phenylketonuria (PKU) · Texas
Annual cost: $3600

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 ...

Ellie

Homocystinuria · Pennsylvania
Annual cost: $2400

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 ...

Renee

Illinois · Phenylketonuria (PKU)
Annual cost: $3000

My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...


John

Phenylketonuria (PKU) · Texas

I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can ...

Les

Phenylketonuria (PKU) · Texas
Annual cost: $6000

These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...

Emalynn

Phenylketonuria (PKU) · Virginia
Annual cost: $5040

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...

Owen

Arizona · Phenylketonuria (PKU)
Annual cost: $6000

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since ...

Maximus, 9

Missouri · Phenylketonuria (PKU)
Annual cost: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...

Sasha, Age 11

Florida · Tyrosinemia
Annual cost: $6000

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...

Mason, Age 2

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...

Pamela

Homocystinuria · Nevada
Annual cost: $3600

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...

Zoey

Argininosuccinic aciduria · Texas
Annual cost: $10200

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 ...

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