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Lincoln, Age 2

California · FPIES
Annual cost: $3600

Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...

Saif, Age 5

Florida · Phenylketonuria (PKU)
Annual cost: $6000

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now ...

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 ...


Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...

Joanna

Homocystinuria · Oregon

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally ...

Isabel

New Jersey · Phenylketonuria (PKU)
Annual cost: $3600

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...


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 ...

Ben, Age 5

EOSINOPHILIC DISORDERS · Indiana
Annual cost: $4800

Though I’m on an employer plan, we contribute another $9000 a year to cover premiums for our 5 member family. That plan has a $6000 ...


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 ...

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 ...

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 ...


Kathy, Age 55

Florida · Phenylketonuria (PKU)

I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...

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 ...

Danae

Homocystinuria · Illinois
Annual cost: $18000

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...

Levi, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $9960

His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under ...


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 ...

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 ...