2-year-old fights genetic disorder
Published 12:00 am Thursday, August 19, 2010
Bama Shore is dying, but still he smiles.
Shore, the 2-year-old son of Jerry and Blanca Shore, loves Alabama football (of course), tractors and trucks.
At 11 months, he was diagnosed with spinal muscular atrophy, the often-fatal disease that destroys the nerves controlling voluntary muscle movement, which in turn, affects crawling, walking, head and neck control and even swallowing.
The couple said they knew something was wrong, when they realized their baby wasn’t meeting important milestones.
Specialists determined that Jerry and Blanca were carriers of the SMA gene, and that Bama suffered from Type II of the disease. Classifications range up to IV and are based on the milestones achieved at the on-set of the disease. Type I patients cannot hold up their head. When both parents who are carriers, a child has a 1 in 4 chance of developing SMA.
“To be given the news that your child will die is the hardest news a parent can ever hear,” said mom Blanca. “But when you look at him, all you can see is his smile – his happiness.”
Bama’s mental capacities are “perfectly fine, maybe even better than that,” but his physical condition is the exact opposite, dad Jerry said.
“He has no movement in his legs, can’t sit up, has no head and neck control and has to sleep with four machines hooked to him,” Jerry said. “But while his body shuts down, his brain is unaffected.”
The average life expectancy of a child with Type II SMA is 2 years.
Bama is 2 years, 4 months. He is the fifth child of six. His sister, Crimson, is 7 months old and is not affected by SMA.
“We take one day at a time,” Jerry said. “You can’t plan anything. A simple cold could kill him. We love every single minute we have with him.”
Both Jerry and Blanca are active fulltime soldiers with the U.S. Army. Jerry serves as the local Army recruiter, and Blanca, an MP at Ft. Rucker.
“It’s hard being away from him, but the insurance you know,” Jerry said.
Still, despite the dire situation, the Shores don’t want pity. They want results.
According Jerry, stem cell research could find a cure for the disease within five years – when funding is made available.
“August is SMA Awareness month, and if I could do one thing, that would be to pass on the information about this disease to as many people as possible,” Blanca said.