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.

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 Smiths

Arizona · Phenylketonuria (PKU)
Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...

Alice, 1

Maryland · Phenylketonuria (PKU)
Annual cost: $1800

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...

Hailey

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...

Draegen, Age 18

Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

Gian, Age 2

North Carolina · Phenylketonuria (PKU)
Annual cost: $4800

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...

Drake, Age 3

Kansas · Phenylketonuria (PKU)
Annual cost: $6000

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...

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 ...

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