Inborn Errors of Metabolism and Conditions on the RUSP

Lisa

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity organization) based on our family size and joint income. Any medical food that we order are out of

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town,

Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they are producing enough milk or getting enough formula, we were in the NICU

I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical formula, but nothing towards all the low protein foods that are required. Medical formula is covered by state of

We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to request a GAP exception to get the foods covered which requires clinics

The Smiths

pkunews

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my children will one day be forced into a situation similar to that they were

Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. We spend hours making her special recipes a week and approximately $150 extra a month in order to buy specific gluten free

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an entirely different ball game. See, Hailey is doing well; thriving in all aspects of life with much credit due

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it.

Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable to afford our house payment. This coverage is essential to ensuring that he has as bright a future as

It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to tears more than once. I make $17/hour. A can of his formula costs about

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

Inborn Errors of Metabolism and Conditions on the RUSP

Lisa

Anthony, 1

Ellie

Piper, 2

Cooper, 10 months

The Smiths

Alice, 1

Hailey

Draegen, Age 18

Gavin, Age 2.5

Robert, Age 11

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