Krew, Age 3

Phenylketonuria (PKU) · Utah

When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...


Dylan, Age 5

EOSINOPHILIC DISORDERS · Ohio
Annual cost: $18000

Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...

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 ...

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 ...


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 ...


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 ...


Tyler, MD from Idaho

Idaho · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Medical or Surgical Condition of Malabsorption · Provider Stories

I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often ...

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 ...

Maximus, 9

Missouri · Phenylketonuria (PKU)
Annual cost: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...

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 ...

Elsie, Nearly 2

FPIES · Pennsylvania

Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband ...

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 ...

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. ...

Kris

California · Phenylketonuria (PKU)

Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. ...