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Elliott, 1 month

Michigan · Phenylketonuria (PKU)
Annual cost: $7200

Elliott is just over 1 month old and we were unaware that we were carriers for PKU. Living in Michigan, we recently learned that our ...


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. ...

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 ...

Jennifer

Maryland · Phenylketonuria (PKU)
Annual cost: $24000

I am a subscribed member to the largest employer sponsored health insurance program in the country, the Federal Employee Health ...


John

Phenylketonuria (PKU) · Texas

I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can ...

Sasha, Age 11

Florida · Tyrosinemia
Annual cost: $6000

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...


Chris

Connecticut · Phenylketonuria (PKU)
Annual cost: $600

In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...

Heather

Missouri · Phenylketonuria (PKU)
Annual cost: $14400

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...


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 ...


Justin, Age 22

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Nebraska
Annual cost: $24000

Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...

Lena, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $1200

We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...

Adysen, Age 11

Phenylketonuria (PKU) · Texas
Annual cost: $3600

Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going 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 ...