By Donna Thornton/News Editor
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.
“We have a roller coaster of things that happen,” Johnnie Sue said. “He can be fine in the morning and by that evening he can’t see.”
But through it all, Johnnie Sue has witnessed heroic resolve in her young son.
“He’s a trooper. He is my hero. He takes everything in stride and with a smile.”
And he does not let the condition hold him back. Nathan is a 7th grade honors student at Westbrook, and he recently made the junior high basketball team.
The Collin McDaniel Hope Foundation is named for an Anniston boy who had NMO and died in March 2012. Like Nathan and many other children in the southeast, he was treated at the Center for Pediatric Onset Demyelinating Diseases.
Johnnie Sue said many of the families of children facing the illness come together to support one another and keep one another informed.
“We just kind of chanced onto each other,” Johnnie Sue said. The parents have continued to work hard to assist one another and to raise money for the foundation, which can help all parents of children with NMO.
Several of the children have their own support teams, with their own colors. Team Nathan’s color is crimson.
Registration for the tournament begins at 7 a.m. with a shotgun start at 8 a.m.. Lunch will be provided and door prizes will be given.
Scott and Johnnie Sue and other families of children with NMO hope that everyone will help to support the golf tournament and the foundation. For more information about the tournament or to reserve a team slot call 256-738-2298 or 256-312-9457.