My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...
When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including ...
On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?
Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...
This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond ...
I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...
Our daughter is on my husband’s insurance which we consider to be good medical insurance through UHC. We however did try to contact ...
I am 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the ...
Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergric to upwards of 40 foods. Even at the current ...
His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under ...
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 ...
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 ...
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 my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently ...
We have two beautiful daughters, Hattie (20 months old) and Maxine (6 months old) who were diagnosed with PKU at birth. Because of ...
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if ...
We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...
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 ...
Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...
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 ...
When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...
Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...
Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York.
His story starts like that of most ...
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop ...
Having medical coverage would mean we could have more of a variety of foods for my son instead of relying on the same foods since we ...