Samsynn, Age 1

North Dakota · Phenylketonuria (PKU)

I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t ...

Maren, Age 6

Colorado · Propionic acidemia

What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...

Lisa, Age 6

Indiana · Phenylketonuria (PKU)
Annual cost: $3000

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...

Garrett, Age 9

Colorado · Phenylketonuria (PKU)

When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call ...

Lucy and Lucas, Ages 6 and 3

Colorado · Phenylketonuria (PKU)
Annual cost: $6000

I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...

Tyson, Age 7

Louisiana · Phenylketonuria (PKU)
Annual cost: $6000

It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. ...

Andrew, Age 18

Texas · Tyrosinemia
Annual cost: $9600

My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...

Joseph

Homocystinuria · Illinois
Annual cost: $4800

Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs . Insurance info: Our ...

Emily, 11

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

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...

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 ...

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 ...

Kelsey, Age 25

Phenylketonuria (PKU) · Virginia
Annual cost: $4800

I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down ...

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 ...

Elliot, Age 2

Illinois · Phenylketonuria (PKU)
Annual cost: $4200

Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula ...

Mason, Age 2

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...

Marisa, Age 10

Indiana · Pending · Phenylketonuria (PKU)
Annual cost: $24000

Our 10 year old daughter Marisa has Phenylketonuria (PKU). She is only able to have 5 grams of protein a day from regular foods. She ...

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 ...

Emily, Age 18

Ohio · Phenylketonuria (PKU)
Annual cost: $2400

My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is ...

Jalen, Age 5

Ohio · Phenylketonuria (PKU)
Annual cost: $3600

My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...

Andrea

Phenylketonuria (PKU) · Texas
Annual cost: $10800

I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All ...

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 ...

Joe

Georgia · Phenylketonuria (PKU)
Annual cost: $2400

When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe ...

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 ...

Harper, 18 months

Maryland · Phenylketonuria (PKU)
Annual cost: $6000

My daughter is a vibrant 1.5 year old. She currently requires about 9 cans of formula a month, which will only increase as she gets ...

Stephanie, 12

Arkansas · Phenylketonuria (PKU)
Annual cost: $6000

Our oldest daughter Stephanie was born with PKU. The costs for her food and supplies is very costly! We as parents do what we can do ...