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 ...

Owen

Phenylketonuria (PKU) · Utah
Annual cost: $36000

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...


Sarah

FPIES · Georgia

Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...


Juliana

New York · Phenylketonuria (PKU)
Annual cost: $2400

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...

Angelica

Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...

Mayes, Age 4

EOSINOPHILIC DISORDERS · Texas
Annual cost: $7200

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was ...

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 ...

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. ...


Tyton, 9 months

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...

Katherine, Age 8

FPIES · Louisiana
Annual cost: $8400

Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. ...


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 ...


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 ...

Zoey, Age 1

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I ...


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 ...

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 ...


Ishaq, Age 5

3-Hydroxy-3-methyglutaric aciduria · Maryland
Annual cost: $3600

Not only helps us but all other families who need to provide safe calories for our children.  Employer plan claims that metabolic ...

Jennifer

Phenylketonuria (PKU) · Washington
Annual cost: $6000

The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.