I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy.
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.
Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...
It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There has […]
It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...
My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a ...
My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...
My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was ...
I began experiencing unusual gastrointestinal symptoms around 1990 which included severe stomach aches, bouts of diarrhea and frequent ...
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.
The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...
Passing this law would mean a lot more money to go around. Better health for me which makes me better for my family.
Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...
Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...
Our daughter is on my husband’s insurance which we consider to be good medical insurance through UHC. We however did try to contact ...
We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better ...
I want to introduce you to my eight-year-old daughter, Claire. At first glance Claire appears to be a normal 2nd grader. She loves ...
My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has ...
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...
Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, ...
My daughter’s formula is currently covered. This formula allows my daughter’s brain and body to remain healthy. It allows her to ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...
I was able to carry two successful pregnancies to term and have to very healthy children as a result of having coverage of medical food coverage. Without medical food coverage, my life would not have been the same.
I am very fortunate to have great coverage for medical food and formula. This has not always been the case. When I was out of school ...
I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to ...
Having coverage of these items would be such a relief! Trying to keep up with the strict diet and routine around administering ...
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...
When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...