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.

Having medical food coverage would expand our daughter's ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.

Annabelle, Age 4

 Phenylketonuria (PKU) · South Carolina
Annual cost: $600

Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...

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. ...

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 ...

Scarlett, Age 2

 Phenylketonuria (PKU) · Utah
Annual cost: $4800

Having coverage would make sure that my baby will always have the food and formula she needs throughout her life to have a healthy ...

Krew, Age 3

 Phenylketonuria (PKU) · Utah

When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...

Ryan, Age 3

 Phenylketonuria (PKU) · Utah
Annual cost: $2400

Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...

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 ...

When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.

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 ...

Clark, Age 3

 Phenylketonuria (PKU) · Utah
Annual cost: $9000

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the ...

Hannah, age 18

 Phenylketonuria (PKU) · Utah
Annual cost: $6000

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have ...

Kacie

 New York · Phenylketonuria (PKU)
Annual cost: $5880

My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not ...

Liza

 Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

Hailey, Age 1

 Iowa · Phenylketonuria (PKU)
Annual cost: $7200

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...

Jessica

 Phenylketonuria (PKU) · Tennessee
Annual cost: $6000

If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...

Amber

 Indiana · Phenylketonuria (PKU)
Annual cost: $4980

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...