Hometown: Zanesville, OH
Age on Race Day: 7
Diagnosis: Spastic Quadriplegic Cerebral Palsy and Hereditary Spastic Paraplegia Type 4
When Don’s parents first met him at just 2 days old, they instantly fell in love. As they adjusted to life as a family, they began to notice he was missing typical developmental milestones. By 1 year old, Don wasn’t trying to walk, and his language skills were not developing. After his parents sought answers for their concerns, Don was diagnosed with spastic quadriplegic cerebral palsy, the most severe form of cerebral palsy, affecting arms and legs.
Just a few years later, when Don was 4, he was able to qualify for a special procedure known as Selective Dorsal Rhizotomy. Though a safe and effective solution for patients diagnosed with cerebral palsy, few surgeons are trained in the technique.
Fortunately for Don, who lives locally, the Selective Dorsal Rhizotomy program at Nationwide Children’s Hospital is world renowned. The neurosurgery team completed the procedure, and Don began making remarkable progress right away. After just a few months, however, Don started to regress, an outcome no one expected. Genetic testing revealed a rare mutation that causes hereditary spastic paraplegia, a progressive and rare disease, only affecting a few thousand people.
It is not yet clear how the disease will progress in Don, but he doesn’t let his diagnosis hold him back.
“You will not find a happier, funnier and more beautiful child,” Don’s mom, Meredith, shares. “Children and adults fall in love with him instantly because of his sweet smile and engaging spirit.”
