Inborn Errors of Metabolism and Conditions on the RUSP

Elliott, Age 6

Elliott was diagnosed with Homocystinuria, or HCU, at 2 years old after suffering a series of blood clots throughout the brain. Once diagnosed, we immediately began treatment, which consists of a very low protein diet, medical formulas, Vitamins B6, B12

Samantha

pkunews

I began my last semester of college excited for the year ahead, doing normal things for a college senior, thinking about life after graduation and hanging with my friends. I was looking forward to my last performance of Step Sing,

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

Six years ago my son, Jacob, was born with a rare metabolic condition that requires detailed, daily medical care, including the use of nutritional supplements. These nutritional supplements are highly specific to his condition and are essential to his thriving.

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

Our daughter Callaway requires specialized formula every single day to stay alive!! While our insurance covers a portion of the formula, it does not cover all of it and each month we must get on the phone with our insurance

Medical foods coverage would allow my son, who has Complex 1 Deficiency and Pyruvate Dehydrogenase Deficiency, to use his Social Security money for something other than very low carb foods and Ketocuisine. My husband and I have employer sponsored healthcare

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

Emmalyn graced us with her presence 10 and 1/2 years ago at 35 weeks gestation weighing in at 5 lbs, 7 ozs. and 18 inches long. Our beautiful baby girl was so tiny and perfect, and I couldn’t believe how

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 coverage of these items would be such a relief! Trying to keep up with the strict diet and routine around administering medicine multiple times a day becomes very stressful. On top of that knowing my child can only eat

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

Ishaq, Age 5

Employer plan claims that metabolic formula is considered food supplement / baby formula and is excluded from plan.

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

Complete cost coverage would be wonderful, but more importantly for us, awareness of the medical need for this coverage and how it affects my daughter’s growth and development is critical. For 12 years, we have cycled through and fought with

I just want Lily Jo to be able go to school and eat lunch like the rest of the children. I want to know that once again someone doesn’t understand or miss read the list of instructions for the food

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

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Inborn Errors of Metabolism and Conditions on the RUSP

Elliott, Age 6

Samantha

Ashlynn, Age 5

Jacob, Age 6

Jessica, Kacey, and Hailey

Callaway, Age 1

Jamieson

Alexander, Age 9 months

Joseph

Sadie, Age 12

Emmalyn, Age 10

Brooke

Brittany

Riverlyn, Age 14 months

Kris

Ishaq, Age 5

Brielle, Age 12

Josephine, Age 6

Braxton, Age 1

Emeline

Elizabeth

Audrey, Age 12

Lily Jo, Age 6

Eliot, Age 11

Teresa