Families Find Hope for
Rare Genetic Brain Disorder
HEALTH AND WELLNESS
Article by Ovid Therapeutics
Your Heart Health
(BPT) - For most parents, their child's first steps or first words are incredible moments in their lives and a reason to celebrate. Well, before their child is born they look forward to these milestones. Parents Mike and Lori Cecere looked forward to watching their son, Weston crawl. Most babies learn between 6 and 10 months old; however, as the weeks passed, and Weston still had not hit this milestone, the Ceceres grew increasingly worried. Eventually, they went to a specialist.
Weston was diagnosed with Angelman syndrome when he was 15 months old. A rare genetic brain disorder, Angelman syndrome affects between 1 in 12,000 to 20,000 people, and is characterized by
"His parents were told he would never be able to walk, .... Weston learned how to walk."
delayed development, cognitive disability, severe speech and sleep impairments, and problems with movement and balance.
At the time of Weston's diagnosis, those common milestones seemed distant, maybe even impossible. His parents were told he would never be able to walk, and things that may seem insignificant to most - something as simple as using a straw - might be impossible for him. Yet despite the odds and the diagnosis, Weston learned how to walk. And though it took his siblings just nine months to learn how to use a straw, after five and a half years, Weston, too, was able to accomplish this task. For families impacted by Angelman syndrome, these are more than milestones; they are victories amidst lifelong challenges and emotional struggles.