I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical ...
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 ...
Medical Nutrition coverage will ensure my son gets the formula he needs to grow and develop normally. I have been fighting for ...
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 ...
Liam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried ...
What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...
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 ...
My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York.
His story starts like that of most ...
Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical ...
We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...
Landyn has been blessed to have Medicaid as his medical costs over they years would have been impossible for our family to pay. When ...
If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
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 would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...
Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and ...
Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk ...
It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There has […]
It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...
My employer, though great for everything else, is self-Insured. Due to this fact they are not required to cover my 13 year old’s formula.
Coverage would mean that i could really offer my son enough nutrition per day instead of rationing. He does eat about 6 foods, but ...
This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...
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 ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...