Fighting for Shealynn: A Mother’s Journey Navigating Prader-Willi Syndrome and the Need for Faster Treatment Approvals
Sue Colon
State: New Jersey
Congressional District:
Diseases
Endocrine Disease, Genetic Disease
Issues and Challenges
Sue Colon has encountered: Access to Medicine
My Story
My name is Sue. I’m a mom to a 3-year-old little girl, Shealynn Grace Williams, living with PWS - Prader-Willi Syndrome. PWS is a rare genetic disorder affecting chromosome 15, causing life-threatening childhood obesity, hyperphagia, hypertonia, and behavioral/mental illnesses; these are just a few of the many symptoms. Shealynn was diagnosed at 2 months old in the NICU. This diagnosis was life-changing for our entire family; life as we knew it would never be the same. Shealynn had difficulty eating with no suck reflexes and overall very low tone. Now things have changed, and Shealynn has increased interest in food and aggressive behaviors. She doesn’t walk or talk due to the severe hypertonia. Every day, I watch her struggle to do things that are basic life skills, and every day, I live with the fear of when her offset stage will hit, as we call it “the food-seeking stage.” As of now, there is only one treatment, Growth Hormones, approved 20 years ago. We have yet to have a treatment approved that will treat the hyperphagia. My advocacy started a year ago when I realized time is of the essence for us; we need timely drug/treatment approvals. Time is something we and many other rare disease and chronic disease patients don’t have. We need a fast way to get these much-needed treatments and therapies approved and out to the patients. So here I am, raising my voice alongside many others for improvement and change.
My Motivation and Inspiration
My motivation and inspiration is my daughter, Shealynn. Shealynn is so brave and has overcome so many obstacles at only 3 years of age.
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