Liam, Age 1

Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600

Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...

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 ...


Elijah, Age 7

EOSINOPHILIC DISORDERS · Texas
Annual cost: $3600

The Medical Nutrition Equity Act would mean my 7 year old son could get proper nutrition he needs. He is currently 45lbs at 7.5 years ...

Vincent

Florida · Tyrosinemia
Annual cost: $3600

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...

Hailey

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...


Juliana

New York · Phenylketonuria (PKU)
Annual cost: $2400

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...


New York Teen, 17

New York · Phenylketonuria (PKU)
Annual cost: $7200

The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, ...

Sarah

Phenylketonuria (PKU) · Tennessee
Annual cost: $37800

My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down ...

Sutton, Age 4

FPIES · Texas
Annual cost: $10200

My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We ...


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 ...


Will, Age 14

Phenylketonuria (PKU) · Washington
Annual cost: $4200

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my ...

Tyler

Massachusetts · Phenylketonuria (PKU)
Annual cost: $1020

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...


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.