Prader-Willi-Syndrome: fight for my son, fight for my community
Endocrine Disease, Gastrointestinal Disease, Genetic Disease, Lung Disease, Rare Disease
Issues and Challenges
Katie has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Caregiving, Copay Accumulator, Disability, Financial Assistance, Step-Therapy / Fail First
I am Katie Moureau. I am a mom to 5 boys ages 12, 6, 4, and twin 10 month olds. My 6-year old, Cade, was born with Prader Willi Syndrome (PWS). Cade spent his first 2 weeks in the nicu awaiting test results to confirm a diagnosis. Cade was floppy and displayed “failure to thrive”. He had more monitors than I could count and a feeding tube in his nose.
The only approved treatment for PWS is human growth hormone (HGH). While our insurance ultimately approved HGH for Cade he was allergic to all but one brand. Cade has an allergy to benzyl alcohol. Benzyl alcohol is a preservative found in many cosmetics including lotion. We had to find this out the hard way. After using a lotion with benzyl alcohol he broke out into a severe rash causing burns on his delicate baby skin at just 1 month of age. Initially insurance would only approve one of the brands he was allergic to. Knowing the reaction he had with the lotion, we just could not experience this again. It took weeks to heal his poor skin. Could you imagine what would happen if we injected him with it? It took us several months to get insurance to agree to cover the preservative free HGH. This refusal by the insurance company to approve the only medication he could safely take, the one his doctor prescribed to begin with, prolonged my son's suffering and put his early development at risk.
I have to fight for Cade, I’m his mother, but I also have to fight for the PWS community I represent.
My Motivation and Inspiration
My children have always been my inspiration. When Cade was diagnosed I was initially crushed, but I vowed that I would give him the world and we would do everything in our power to keep him safe and happy.