My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
I stopped taking the formula because it's $2000/month out of pocket and I couldn't afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn't have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.
In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...
Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming ...
Complete cost coverage would be wonderful, but more importantly for us, awareness of the medical need for this coverage and how it ...
This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond ...
Medical foods coverage would allow my son, who has Complex 1 Deficiency and Pyruvate Dehydrogenase Deficiency, to use his Social ...
Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...
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 ...
Our Family Story:
During the spring and summer 2019, we struggled to understand what our 10-month-old son’s, Nolan, medical ...
I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down ...
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 ...
Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and ...
Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...
Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was ...
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...
Our 10 year old daughter Marisa has Phenylketonuria (PKU). She is only able to have 5 grams of protein a day from regular foods. She ...
Medical nutrition coverage has significantly reduced the cost and strain on our family’s income for our daughter’s food. ...
I have been on medical formula for my entire life. I am coming up on my 21st birthday and still have only been able to conquer one ...
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 ...
When our daughter was born, our two employer-provided insurances refused to cover her condition.
When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...
Our family is currently affected by having to pay out-of-pocket for medically necessary formula (Elecare, Jr) for our now 7-year-old ...
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
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 ...
My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because ...