Oakley Morris’ earliest years were filled with boundless energy and good health. But by age four, her family noticed small changes. “Physically, she wasn’t quite keeping up,” her mother, Haley, recalls. “She was having a hard time navigating playgrounds, started falling and getting hurt a lot, and started to struggle academically.” After a series of doctor’s appointments, an MRI, and genetic testing, Oakley received the devastating diagnosis in 2022: juvenile Tay-Sachs disease, a rare, inherited, and currently incurable genetic disorder that progressively affects the nervous system.
For parents who didn’t fall into the demographic typically associated with Tay-Sachs, the diagnosis was unimaginable. “For us to both be carriers and for Oakley to get it was almost unheard of,” her mom shared. “When we met with a doctor, we were basically told her life expectancy was only a couple of years after the onset of symptoms. She was six at the time, so already two years in. We were terrified we would lose her so soon.”
In the search for answers, Oakley’s family traveled to specialists across the country before being directed back home to Atrium Health Levine Children’s Hospital in Charlotte, N.C. “We’ve had a wonderful experience,” her mom says. “Dr. Katherine Dempsey has gone above and beyond for Oakley. She helps me navigate referrals, insurance, and financial assistance. I feel really good having her and the team we’ve established on our side.” For Oakley’s family, Levine Children’s has become more than a place of care; it is a source of hope as they navigate the daily realities of her condition.
Juvenile Tay-Sachs brings complex challenges. Oakley struggles with balance and coordination, making everyday tasks, like getting dressed or climbing stairs, more difficult. “It takes her longer to process physically and mentally,” her mom explains. “Her body and mouth sometimes take a while to catch up with what her mind wants them to do. Learning new things in school has become harder.” Still, Oakley faces every day with courage, joy, and the support of her family, teachers, doctors, and an entire community cheering her on. “Oakley has more people praying for her than anyone I’ve ever met,” her mom says.
Despite her diagnosis, Oakley, now 10 years old, continues to live life to the fullest. “She’s an angel on earth,” her mom says. “She has the purest soul and the most empathetic heart. She is so kind and loving. And thankfully, she’s mostly unaware of her diagnosis. She loves her life and doesn’t let her struggles stop her from having fun.” Oakley finds joy in the simple moments: spending time with her friends, sleepovers with her grandparents, and watching her favorite Disney princesses.
While there’s currently no cure for Tay-Sachs, advances in research and care, along with the compassion of dedicated medical teams, bring hope to families like Oakley’s. Through faith, community, and love, Oakley continues to shine light into even the hardest moments.
On November 1, Oakley and her family will join the Care for Rare team at the 30th Annual Hopebuilders 5K, presented by Morris-Jenkins. Together, they’re raising vital funds for the Ward Winslett Center for Complex and Rare Diseases at Levine Children’s. Haley hopes that by sharing Oakley’s story and supporting the hospital, they can help other families facing rare and complex diagnoses find the care they deserve. “We’re participating in Hopebuilders because we want to support the hospital that’s done so much for us,” Haley says, “and to raise awareness for rare diseases like Oakley’s that too often get overlooked. When we were first diagnosed, we were passed around the country because no one knew what to do with us. I don’t want that to continue to be the case. This diagnosis is hard enough without having to navigate the medical and insurance systems on your own.”
To join the Care for Rare team and hundreds of others for this meaningful event, visit Hopebuilders5K.org.