Curt Poer, 7, a first-grader at Lake Park Elementary School in Albany, will be the recipient of a Dec. 15, 2012, bake sale by boys in Deerfield-Windsor School's 6th grade. Curt, seen with his mother, Katherine Poer, has Leigh's Syndrome, an incurable neurological illness. Poer is hoping to get her son into a clinical trial in California. The bake sale proceeds will help defray medical costs. (Dec. 13, 2012)
ALBANY, Ga. -- Curt Poer had just turned 5 years old and was playing soccer when his mother noticed the change. Instead of running with his arms pumping, Curt's left arm was clutched tightly to his chest.
Then he began having trouble walking, and Katherine Poer took him to a doctor who referred Curt to a specialist. It took a while, but Curt, a first-grader at Lake Park Elementary, was finally diagnosed with Leigh's Syndrome, a rare affliction that strikes one in 40,000 children.
According to the National Institutes of Health, Leigh's Disease is a severe neurological disorder that affects the central nervous system and typically arises in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within a couple of years, usually due to respiratory failure.
There is no treatment.
Now 7, Curt spends most of his time in a wheelchair and is currently on a waiting list for a new drug trial, EPI 743, in California. Just 10 children are accepted per year, and the Poers are waiting on a phone call.
If accepted, they will have to spend three months on the West Coast during the trial.
In the meantime Deerfield-Windsor's sixth-grade boys will conduct a bake sale 8 a.m.-10:30 a.m. Saturday in the Badcock Furniture parking lot on Westover Boulevard near the Albany Mall as a fund raiser to help offset the family's expenses.
The community service event is an annual occurrence for the school's sixth-grade boys class.
"This is the third fund-raiser for us," Poer said. "The first time people offered us money to pay medical bills it was really, really hard for me because I am used to working for my own money. I'm lucky to have primary and secondary insurance, but there are no pediatric specialists in the area and we've seen neurologists in three different states.
"It didn't take me long to realize that I can't do this on my own financially."
If Curt is not accepted into the California program, three more new trials are beginning in Ohio, Texas and Washington state.
"We applied for the (California) program in September, and are still waiting to hear from them," Poer said. "Anyway, if we don't get in this trial we will apply for the others and just keep on trying until we're accepted somewhere."
She expressed her deep appreciation for the community's support, and gave a special nod to the Deerfield boys.
"I think what they are doing is awesome," Poer said. "They aren't worried about themselves or what they are getting for Christmas. It's nice to know that even kids are concerned about other people."