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 ...


Kelly

Illinois · Phenylketonuria (PKU)
Annual cost: $15000

Having medical nutrition covered by the government would make life a lot more simple. I would have less stress and more peace of mind ...


Annabelle, Age 4

Phenylketonuria (PKU) · South Carolina
Annual cost: $600

Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...


Ezra, Age 3

Oklahoma
Annual cost: $4200

The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...


Evan, Age 8

Florida · Maple syrup urine disease

Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...

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, ...

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 ...

Kayla

Oregon · Phenylketonuria (PKU)

When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...

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 ...

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 ...


Sarah

Connecticut · Phenylketonuria (PKU)
Annual cost: $240

When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...


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 ...

Nicole

Michigan · Phenylketonuria (PKU)
Annual cost: $4800

Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...

Danae

Homocystinuria · Illinois
Annual cost: $18000

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...

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 ...


Sarah, Age 50

Phenylketonuria (PKU) · Washington
Annual cost: $14400

Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...