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, ...

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 ...

Breeze, 6

Colorado · Phenylketonuria (PKU)
Annual cost: $2400

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living ...


Ishaq, Age 5

3-Hydroxy-3-methyglutaric aciduria · Maryland
Annual cost: $3600

Not only helps us but all other families who need to provide safe calories for our children.  Employer plan claims that metabolic ...


Jeff

Maple syrup urine disease · Pennsylvania
Annual cost: $2700

We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...


T, Age 5

EOSINOPHILIC DISORDERS · FPIES · Texas
Annual cost: $8400

My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...

Leah, Age 12

Alabama · Homocystinuria
Annual cost: $3600

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters ...


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 ...

Clark, Age 3

Phenylketonuria (PKU) · Utah
Annual cost: $9000

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...

Emeline

Maryland · Phenylketonuria (PKU)
Annual cost: $5400

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for ...

Ben, Age 5

EOSINOPHILIC DISORDERS · Indiana
Annual cost: $4800

Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 ...

Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $300

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...