When Sadie Rae Haywood arrived early on March 8, 2016, her parents were overjoyed. But their happiness quickly turned to fear when she was airlifted to Levine Children’s Hospital due to breathing complications. Initially, doctors suspected underdeveloped lungs, but further tests revealed something far more serious—a brain hemorrhage.
In her first few months, Sadie endured multiple surgeries. After weeks in the hospital, she was finally able to go home at 10 weeks old. Though her parents cherished having her there, they couldn’t shake the feeling that something was still wrong. Genetic testing soon confirmed their worst fear—Sadie had Sanfilippo Syndrome, a rare and fatal disorder often likened to childhood Alzheimer’s. She would develop normally for a few years, only to lose her abilities over time.
Despite the diagnosis, Sadie continued to amaze everyone. With overwhelming support from their community, her family celebrated every milestone. She learned to walk at two, spoke countless words, and radiated pure joy.
Their dreams for her future had shifted—from imagining prom and college to simply hoping she would live past 14 and not suffer. They focused on cherishing the present, making her life as normal and happy as possible. Though the future remained uncertain, Sadie had already left an incredible impact, inspiring hope and action for a cure. No matter what lay ahead, her mother felt endlessly blessed to be hers.
Credit : Ashley Haywood
