We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of ...
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...
We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better ...
Mabel was diagnosed with the metabolic disorder, Phenylketonuria (PKU) at birth. She is thriving with the help of her metabolic ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
I have avoided purchasing the medical food I needed because we can’t afford the food.
I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can ...
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’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if ...
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York.
His story starts like that of most ...
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...
Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to ...
My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...
This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...
Our family is currently affected by having to pay out-of-pocket for medically necessary formula (Elecare, Jr) for our now 7-year-old ...
Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance ...
We are fortunate that in the State of Ohio our daughter’s medical formula is covered. Because she is a responder to Kuvan, we ...
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. ...
My 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being ...
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 ...
Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...
When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.
Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...
A young couple with a child with PKU in my care made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.
Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...