By State

Braxton, Age 1

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

Brooks, Age 9 monhts

My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then

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

Kathleen

I am disabled so we are a one-income family (I am unable to work outside the home). I have several diseases and syndromes that cause multiple issues: I am unable to digest gluten, I need a special diet for my

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

My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at

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

Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient

Being able to access medical formula is absolutely necessary for my family. My 10 year old son gets 1/3 of his nutrition from Neocate Splash at the moment. We originally tried the top six elimination diet but unfortunately my son’s

We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was officially diagnosed failure to thrive at 2 months. He was diagnosed with significant GERD at 4 months. He

Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even

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

I have been on medical formula for my entire life. I am coming up on my 21st birthday and still have only been able to conquer one microwaved potato a day. My doctors tell me I’ll be formula relied for

Sebastian, Age 25

Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s

Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein diet and supplementation of essential amino acids with a special formula, manufactured only by Abbott Laboratories. Without this

While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help

I began experiencing unusual gastrointestinal symptoms around 1990 which included severe stomach aches, bouts of diarrhea and frequent vomiting. It took six years of going from doctor to doctor until I was given the diagnosis of what was in 1996

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands employment and Medicaid do not cover compounded medication. Without this medication he would suffer from seizures, brain atrophy, vision loss,

When my daughter Sienna was 3 months old she was diagnosed with a rare metabolic disease called mma-cblc. This disease prevents her from processing b-12 correctly or breaking down protein correctly. She was in the NICU & very critical before

By State

Braxton, Age 1

Brooks, Age 9 monhts

Emeline

Elizabeth

Audrey, Age 12

Kathleen

Lily Jo, Age 6

Eliot, Age 11

Ronan, Age 2

Teresa

Sarah

Isaac (13) and Caleb (11)

Rylan, Age 10

Sawyer, Age 2

Katherine, Age 8

Kendall

Kurt

Yazmin, Age 2

Shane

Sebastian, Age 25

Camden, Age 10

Lucas, age 18 months

Jeffrey

Grayson, Age 2

Sienna, Age 22