Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.
Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...
Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...
Insurance won't cover my son's formula unless he's tube-fed.
The Medical Nutrition Equity Act would mean my 7 year old son could get proper nutrition he needs. He is currently 45lbs at 7.5 years ...
The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...
My son Alex was born with PKU. He is currently 9 months old and requires 6 ounces of his PKU formula. As he grows this is most likely ...
Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...
It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food.
It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.
The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, ...
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state ...
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 ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance ...
My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it ...
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We ...
Sarah's family's inability to pay for medical nutrition is causing deficits which may impair her growth and cognitive development.
Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...
Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my brain and body.
I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my ...
I am a city worker. The free insurance didn’t cover feeding tube supplies or formula. So I had to switch to an insurance I had to ...
Because of the cost of desperately required essential nutrition (allergen free toddler formula) I have chosen to continue ...
Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward ...
I recently became ineligible for the Medicaid insurance I was on, I make just a little over the cap for income to be eligible. While I ...
Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...
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 ...
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 ...