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.
While we are very fortunate to have insurance that can help us with the costs, there is still a great financial strain associated with ...
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 ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...
When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...
The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...
Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance ...
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...
My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...
Turning 26 and navigating through my own insurance was a nightmare.
Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...
When our daughter was born, our two employer-provided insurances refused to cover her condition.
When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...
When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had ...
I stopped taking the formula because it's $2000/month out of pocket and I couldn't afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn't have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.
In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...
My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...
Mabel was diagnosed with the metabolic disorder, Phenylketonuria (PKU) at birth. She is thriving with the help of her metabolic ...
My name is Breanna and I am 23 years old. Luckily, I am still on my parents insurance and plan on staying on it until I can no longer. ...
I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...
When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...
I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t ...
We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...
When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call ...
I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...
It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. ...
My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...
This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...