May 2018 Archives

Christiana, Age 11

We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we have been able to rely less on specialty low-phenylalanine foods but do still purchase low protein pasta.

When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with letters of necessity from her Doctors. My husband changed jobs and second company insurance also refused

My son Denver appears to be a normal ordinary 10 year old boy until he wants something to eat, gets sick, or his PHE levels are too high. When he wants something to eat it must be low protein therefore

Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance completely deny her medically necessary formula after the age of 12 months. We have appealed, fought, had

My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it was until it was explained to me as do most people.

Gian, Age 2

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.

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the insurance company acted like it wasn’t necessary. They cover the Kuvan medication which gives him more protein

Having medical coverage would mean we could have more of a variety of foods for my son instead of relying on the same foods since we will have more money to spend on fresh foods.

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 diagnosed with a rare metabolic disorder requiring a strict medical diet in order to prevent

Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only known management for PKU (low protein diet) my daughter would incur severe neurological issues and inability to complete daily

We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU from Jackson’s newborn screening test. I initially worked company that covered medical nutrition until Jackson

Michelle

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 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the diet at age 18 and that I might not be

Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after birth. With the help of his Mom, Dad and extended family his PHE levels have

When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including extended family, had never heard of PKU. The beginning of our journey was filled

My name is Christy and I am a mother to 2 beautiful kids, both with PKU. My daughter, Rebecca, is 21 on Sunday and my son, Stephen, is 18. My entire world changed on June 14, 1997. That is the

For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage for the moment (after going through the petitioning process with our insurance), but I worry what could change

Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very fortunate to have Kennedy’s formula covered, we will be burdened with hundreds of dollars in medical food

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, meaning we need to purchase food and formula to meet his nutritional goals. This

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since birth about how he will maintain insurance coverage as an adult. How will he be able to

My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical food, but I worry about the future. If we did not have this insurance, we would not

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 such a low daily tolerance ( 260 mg of phe

My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a small amount of his medical formula. We do not qualify for a state run

My son just turned one. Just over a year ago, our lives drastically changed when we found out our little guy has PKU. Since he’s still small, he doesn’t eat too much yet. However, as he grows and eats more,

Kelly

My pasta costs almost 10 times more than pasta bought at a local grocery store. My medical food should be looked at as medicine, not food. It is a requirement, not a choice.

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Month: May 2018

Christiana, Age 11

Emma, Age 10

Denver, Age 10

Emily, Age 6

Oliver, 10 months

Gian, Age 2

Drake, Age 3

Brayden, 5 months

Maeve, Age 8

Isla, Age 5

Jackson, Age 6

Michelle

Jessica, Age 36

Adler, Age 3

Silas, Age 4 and Elijah, Age 7

Rebecca and Stephen

Lelia, Age 2

Kennedy, Age 9 months

Ethan

Owen

Linkyn, 18 months

Luke, Age 4

Nico, 15 months

Jordy, Age 1

Kelly