Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.
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 ...
We are a poor family. Aside from food stamps we don’t have anything else to help with regular food let alone medical food. over ...
Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...
My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...
My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living ...
The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, we’ve had difficulty affording supplemental educational support for our son. These costs limit what we have available to maintain our home properly. We’ve had to put off costly repairs due to not having […]
The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, ...
Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical ...
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 ...
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 ...
Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...
Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...
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 ...
Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable ...
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 ...
We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we ...
When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with ...
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 ...
Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance ...
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 ...
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. His mother will not be able to afford to buy this food for him if […]
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 ...
Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...
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 ...