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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, ...


Cade

EOSINOPHILIC DISORDERS · Georgia
Annual cost: $5520

Cade, who lives near Atlanta, GA, was diagnosed with a cow’s milk allergy around 5 months old after he developed a rash after ...

Ryan, Age 3

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...

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 ...

Vincent

Florida · Tyrosinemia
Annual cost: $3600

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...

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 ...

Millie

Alabama · Phenylketonuria (PKU)
Annual cost: $9600

Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently ...


Ashley, Utah Metabolic Nurse Practitioner

Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Utah

Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...


Jeff

Maple syrup urine disease · Pennsylvania
Annual cost: $2700

We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...

Clayton, Age 4

Ohio · Phenylketonuria (PKU)
Annual cost: $5040

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...

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 ...


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 ...


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 ...

Riley

Illinois · Phenylketonuria (PKU)
Annual cost: $9600

My 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being ...


New York Teen, 17

New York · Phenylketonuria (PKU)
Annual cost: $7200

The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, ...

Will, Age 12

Phenylketonuria (PKU) · Texas
Annual cost: $12000

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...