By State

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

T, Age 5

By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.

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

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was labeled as failure to thrive, experienced daily pain, and yet, lived each day with

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.

Following a lengthy 30day in the ICU, with a diagnosis of Food Protein Induced Encrolitis, Gianna was prescribed the formlua Elecare. This came at a substantial cost for her 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

My son, Armando, struggled to grow and gain weight since birth. He would vomit daily and choke on foods once they were introduced. His first endoscopy was at one year old and confirmed an EoE diagnosis through biopsies. He relies

My son is 100% IV nutrition/hydration dependent. Without insurance covering his very expensive weekly deliveries of life sustaining supplies, I do not know how we would be able to pay for it all. Without nutrition/hydration, my son would not survive

My husband and I had to declare bankruptcy this past year because the medical bills and formula were so costly. Our former HMO did not cover her medically necessary formula at a cost to us of $1,500 per month just

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.

I never thought that food allergies were “that serious” until all 3 of my children were diagnosed with IGe mediated allergies, EoE, and FPIES. To say that feeding them has been a challenge is more than an understatement. The true

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

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By State

Elliott, Age 6

Samantha

Ashlynn, Age 5

Jacob, Age 6

Jessica, Kacey, and Hailey

Callaway, Age 1

T, Age 5

Jamieson

Alexander, Age 9 months

Mayes, Age 4

Joseph

Gianna

Sadie, Age 12

Armando, Age 2

Tommy, Age 19

Bryleigh, Age 11

Emmalyn, Age 10

Brooke

Brittany

Riverlyn, Age 14 months

Kris

Ishaq, Age 5

Floyd, Age 2

Brielle, Age 12

Josephine, Age 6