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.
Hello, I am the mother of a ten-month-old phenylketonuria patient. Having more help to get instant needs would be amazing. With having ...
Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance ...
Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop ...
Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...
If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...
We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of ...
We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.
We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...
My name is Sarah. Im 24 and I have classical PKU which means my enzyme in my liver has a hard time fuctioning breaking down ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...
Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for ...
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 ...