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 ...
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if ...
My son Denver appears to be a normal ordinary 10 year old boy until he wants something to eat, gets sick, or his PHE levels are too ...
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 ...
Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was ...
Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end)
Where it all began: I located a new ...
My son has eosinophilic gastritis and esophagitis. His foods are very limited and he basically lives off chicken breast and rice. Even ...
Medical coverage for our family will mean less time fighting the insurance for coverage. They decide when and how they are going to ...
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 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being ...
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...
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 ...
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state ...
My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...
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 ...
Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs .
Insurance info: Our ...
Food is the most important thing to any mother who has an infant. While most mothers who have a two week old are just making sure they ...
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 ...
My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was ...
I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...
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. ...
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 ...
It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.
We are a low income family. I am a single mother and I provide school with low protein lunches 5 days a week. It is extremely ...
Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...
This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond ...