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Audrina, Age 8

North Carolina · Phenylketonuria (PKU)

My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...

Nia, Age 3

Maple syrup urine disease · Ohio
Annual cost: $3600

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...

Allen

Michigan · Phenylketonuria (PKU)
Annual cost: $4980

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...

Caroline, age 18 months

FPIES · Maryland
Annual cost: $9600

Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to ...

Joe

Georgia · Phenylketonuria (PKU)
Annual cost: $2400

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe ...

Alice, 1

Maryland · Phenylketonuria (PKU)
Annual cost: $1800

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...

Angelica

Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...

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 ...

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 ...

Lisa

Ohio · Phenylketonuria (PKU)
Annual cost: $30000

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...

Ethan

New York · Tyrosinemia
Annual cost: $4800

Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, ...


Sarah

FPIES · Georgia

Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...


Kathy, Age 55

Florida · Phenylketonuria (PKU)

I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...

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