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Max, Age 17 months

Colorado · FPIES
Annual cost: $3240

My son, Max was diagnosed with FPIES after I stopped breastfeeding and he started on milk-based formula and we started introducing ...


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 ...

Anthony, 1

Phenylketonuria (PKU) · Texas
Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

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 ...


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 ...


Corey, Age 26

New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

Ellie

Homocystinuria · Pennsylvania
Annual cost: $2400

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they ...

Nia, Age 3

Maple syrup urine disease · Ohio
Annual cost: $3600

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...

Venetia

Louisiana · Phenylketonuria (PKU)
Annual cost: $6000

I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...

Piper, 2

Michigan · Phenylketonuria (PKU)
Annual cost: $12000

I had never heard of PKU until my two-year-old granddaughter was diagnosed.  Fortunately, the state of Michigan pays for her medical ...


Jessica

Indiana · Phenylketonuria (PKU)
Annual cost: $8400

Our 25 year old daughter has always done really well with her PKU diet, especially throughout her schooling! We were able to receive ...