I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...
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 ...
Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...
Elliot was diagnosed with PKU at 6 days old. He is a happy, energetic and loving 2 year old. We are fortunate enough to have formula ...
We have many bills due to traveling out of state to help our 5 year see doctors that specifically help his condition. By not paying ...
The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.
My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...
When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a ...
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will ...
Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.
In Massachusetts we are fortunate to have a mass mandate for formula and up to $5000 dollars coverage for medical food. From what it ...
Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was ...
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 ...
James DeLano is a 12-year-old boy who has lived his life with rare, chronic disease. As a young child, James was diagnosed with an ...
My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York.
His story starts like that of most ...
If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...
Hello, I am the mother of a ten-month-old phenylketonuria patient. Having more help to get instant needs would be amazing. With having ...
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. ...
We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of ...
My daughter has EoE allergies and IgE allergies and is already a tiny girl. At 17 yrs she only weighs 100lb. We are still trying to ...
Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
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 ...