Draegen, Age 18

Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

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 ...

Jalen, Age 5

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...

Ashlynn

California · Phenylketonuria (PKU)
Annual cost: $6996

My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical ...

Hannah, age 18

Phenylketonuria (PKU) · Utah
Annual cost: $6000

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...

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 ...

Chelsie

Phenylketonuria (PKU) · Utah
Annual cost: $24000

Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...

Walker

Georgia · Phenylketonuria (PKU)
Annual cost: $5400

Having full and mandatory coverage would release a lot of strain on our annual budget and give us peace of mind. Trying to get ...

Nolan

FPIES · Massachusetts
Annual cost: $7200

Our Family Story: During the spring and summer 2019, we struggled to understand what our 10-month-old son’s, Nolan, medical ...

Mayes, Age 4

EOSINOPHILIC DISORDERS · Texas
Annual cost: $7200

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was ...


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 ...


Ellis, Age 12

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...


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 ...

Briana

Oklahoma · Phenylketonuria (PKU)
Annual cost: $9000

Briana was born in 1989 and there were not many supports for her then, both in medical assistance or low protein supplement and food ...