Phenylketonuria (PKU)

Ashlynn, Age 5

Having coverage for medical nutrition would mean the world to our family. Instead of feeling like I have to creatively figure out how to buy normal foods at the store I could order more freely and feel more confident. My

Having coverage for medical nutrition would mean everything to our daughters. They have had to take jobs because of the insurance alone. One will be coming off of our insurance in two years and she is already worried about what

My son Alex was born with PKU. He is currently 9 months old and requires 6 ounces of his PKU formula. As he grows this is most likely to increase as we are still trying to figure out his tolerance

Medical nutrition, including my medical drink, has allowed me to function for 26 years in the construction industry as a Project Manager and Estimator as well. This coverage would allow me to continue to function in this capacity and not worry about my health impacting my ability to provide for my family.

My daughter’s formula is currently covered. This formula allows my daughter’s brain and body to remain healthy. It allows her to thrive in school and in the activities she is interested in. Sadie even competes in rodeo! She is an

Having coverage for medical nutrition through TRICARE has meant everything to me and my family. 2 of my brothers and I were diagnosed with PKU when we were born. We were lucky enough to have been treated with medical formula

Brittany

My daughter, Brittany, was born with PKU and we were able to provide her with the nutritional products that she needed to avoid significant brain development problems. Unfortunately, that is not the case for all children and adults in the US.

Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. Particularly, heading toward age range 50+. As a first generation PKU patient, I have sustained brain damage as a

There are a lot of difficulties that come with having a metabolic disorder. Our society revolves around food, and daily accommodations/restrictions must be figured out for family meals, social gatherings, school functions, etc. My daughter is hungry often because of

If we had coverage for Josephine’s medical nutrition it would be such a blessing to not only Josephine but to our family. Because we pay so much in medical needs it has prevented us from spending more on foods that

Not having to worry about paying for medical nutrition would be a huge relief to our family. NO family should have to pay for these things, or should at least have the support of their insurance company! This is a

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for medical nutrition monthly, this adds up to about $5,400 a year. All of this money going

I’m Elizabeth and I have Classic PKU. When I was five my drs and parents a took me off the diet and formula. I was fine till age 30. That’s when i started suffering from pku side effects and severe

This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, healthy, thriving 11-year-old. He is a talented swimmer too, having achieved a Junior Olympics time standard

Teresa

My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i struggle everyday with high levels n can never get to normal level like docs want even

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of Education and I have had excellent coverage ever since. I can only imagine how different life would have

Kendall

My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There was very little know about how to treat PKU back then and only

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in coverage. I wouldn’t have to worry about my insurance deciding what’s best for my treatment. It means I

Yazmin was four days old when she was diagnosed with mild PKU. She’s been allowed most things except for meat, she still requires formula daily. We work effortlessly daily to try and provide meatless options for our girl which has

We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the cost to provide both of them with adequate medical foods was so intense, especially during the picky

My daughter was born with PKU and our world was flipped upside down to say the least. I fought with our insurance company for months, we have “good” insurance, and yet they still they don’t see this as necessary. Having

Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we elected to enroll in our states children’s special illness healthcare program. It costs us about 150.00 a month

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what career to pursue and where to live without the fear of suddenly losing access to medical formula

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I would have severe mental affects from high Blood protein levels or malnutrition. Due to the pandemic, I

I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals

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Phenylketonuria (PKU)

Ashlynn, Age 5

Jessica, Kacey, and Hailey

Alexander, Age 9 months

Joseph

Sadie, Age 12

Brooke

Brittany

Kris

Brielle, Age 12

Josephine, Age 6

Braxton, Age 1

Emeline

Elizabeth

Eliot, Age 11

Teresa

Sarah

Kendall

Kurt

Yazmin, Age 2

Zoë and Stella

Raelyn, Age 3

Gannon, 8 months

Elyse

Heather

Leonard, Age 3