Gian, Age 2

North Carolina · Phenylketonuria (PKU)
Annual cost: $4800

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...


Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...


Sabastian

Maple syrup urine disease · Nevada
Annual cost: $3000

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...


Jennifer, Idaho Dietitian

Idaho · Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories

As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...


Brittany

Maine · Phenylketonuria (PKU)

The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...


Laryssa

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

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...

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 ...

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 ...

Claire, Age 8

Louisiana · Tyrosinemia
Annual cost: $6900

I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves ...


Jane, Age 7

CROHN'S · Illinois
Annual cost: $3960

Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...

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, ...

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 ...


Michelle

Phenylketonuria (PKU) · Washington
Annual cost: $3000

I am very fortunate to have great coverage for medical food and formula. This has not always been the case. When I was out of school ...

Melissa, Age 26

Phenylketonuria (PKU) · Texas
Annual cost: $8840.04

I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to ...

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 ...

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 ...

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