Neuromyelitis Optica is an uncommon illness – one most people probably have not heard of at all.
But it’s something Nathan Gilbert, 12, and many other children face each day. Nathan, a student at Westbrook Christian Academy is a trooper, his mother Johnnie Sue Gilbert said, and does not let the illness get him down.
Johnnie Sue and her husband Scott Gilbert want to raise awareness about Nathan’s condition and raise money to help the families of children with NMO who need financial assistance for travel grants to and from doctor visits, or with other medical necessities they face in caring for their children.
Proceeds from the golf tournament on Aug. 24 at the Boaz Golf Club at 1715 Ala. Highway 205 in Boaz, will go to The Collin McDaniel Hope Foundation.
Johnnie Sue said organizers are looking for hole sponsors ($100 per hole), door prizes and donations to the tax exempt organization. Receipts will be available for any donations received. Entry fee is $50 per golfer.
NMO is a disease of the central nervous system. If affects the optic nerves and spinal cord. It causes pains and vision loss, weakness, numbness and paralysis of the arms and legs, along with sensory disturbances and other challenges.
For Nathan, Johnnie Sue said, the illness started when he was 10. He had a sinus infection and he started sleeping all the time. Then one day he told her he couldn’t see. He went for an MRI immediately. “They thought he had a brain tumor,” Johnnie Sue recalled.
Nathan was taken to the Callahan Eye Institute and treated for optic neuritis, something doctors told the family would be a one-time illness.
But that wasn’t the case. Symptoms persisted, causing more problems than just vision. On Dec. 5, 2012, Johnnie Sue said, Nathan said he didn’t feel well.
“He stood up and just fell over,” she said. “He had a grand mal seizure.” He had another as they rushed him to Children’s Hospital in Birmingham.
Nine days later, Nathan couldn’t walk. Tests continued until Nathan was diagnosed with NMO, a condition often mistaken for multiple sclerosis. Nathan continued treatment for the condition, though there is no FDA approved drug for it, and doctors say there is no cure.