People with Phenylketonuria (PKU) who rely on medical foods

Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.

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 ...

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 ...

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 ...

Emalynn

Phenylketonuria (PKU) · Virginia
Annual cost: $5040

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...

Asher, 4

Illinois · Phenylketonuria (PKU)
Annual cost: $1800

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...

Renee

Illinois · Phenylketonuria (PKU)
Annual cost: $3000

My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...

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 ...

Breeze, 6

Colorado · Phenylketonuria (PKU)
Annual cost: $2400

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living ...

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, ...

Lisa

Ohio · Phenylketonuria (PKU)
Annual cost: $30000

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...

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, ...

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 ...

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