My CHEO Story
My 11 year old daughter Kennedy was born at 36 weeks weighing 4lbs 5 ounces. After spending her first 6 weeks in the NICU and at CHEO she was diagnosed with Failure to Thrive. Over the next 4 years we met with many specialists and therapists at CHEO and OCTC to help achieve the many missed milestones. Eventually Kennedy was referred to CHEO Genetics by a developmental pediatrician and on April 1, 2014 (not an April’s Fool joke), Kennedy was diagnosed with Prader-Willi Syndrome. PWS is a genetic disorder resulting from an abnormality of chromosome 15. Some of the common symptoms of PWS are hyperphagia, scoliosis, sleep disturbances, growth hormone deficiency, hypotonia, learning disabilities, infertility, behavioral challenges and mental illness. The initial diagnoses shattered our hopes for our daughters’ future, but with the help of the many doctors, specialists, nurses and therapists at CHEO we are hopeful that she can still live an independent and fulfilling life!
Why I'm involved
Since Kennedys’ diagnosis in 2014, we have taken part in a few Clinical trials. Two of the clinical trials that Kennedy participate in were for drug development to help find treatments for hypherphagia. One was in New York City and the most recent one was in Nashville. The drug that was used in the Nashville trial has now received top-line results and will put forward to the FDA. With this firsthand experience, I know how important research is to help find treatments and to give families hope!
- Patient and Family Advisory Committee Member 2020-2022