The Little Neck Nursing Home may be a place for elderly care, but in October it will be holding a charity drive for an 8-year-old girl with a little-known, poorly understood neurological disorder called Rett syndrome.
Queens-born Camryn Oelkers developed the disease around the age of 1 and her family has since battled with a neurological disorder that has rendered the red-haired girl unable to speak.
“We first started to notice something wrong around 15 months,” said Camryn’s father Thomas Oeklers. “She fell a lot, didn’t speak a lot or play with the other kids.”
Oeklers didn’t know of the disease’s existence before his daughter was diagnosed with it and he said, “Doctors were a little dumbfounded. No one knew anything for a while.”
Rett syndrome is mostly found in girls because it is a mutation of the X-chromosome and boys who get it tend to die before they’re even born, according to the little that researchers understand. With two X-chromosomes, girls don’t die. Most people with Rett syndrome have shrunken heads and suffer from severe seizures, but Camryn is lucky enough to not have either of these symptoms. And she is happy, according to Thomas.
“We’re very lucky with how responsive she is [to physical therapy],” he said, explaining that she is able to walk with only minor assistance from people.
The Little Neck Nursing Home employs Camryn’s great-grandmother, Agnus DeBoesche. Having worked there for almost 40 years, she’s grown close with the staff. Since October is Rett Syndrome Awareness Month, the nursing home administrators decided to hold a charity drive to give money to the Rett Syndrome Research Trust.
The charity drive will be held in early October and the nursing home will have a lemonade stand to raise money, according to the home’s administrators. The idea for a lemonade stand came from the International Rett Syndrome Foundation and the home plans on bringing Camryn in to serve the refreshments.
“I don’t like to talk about my problems a lot, but they wanted to do something in honor of me,” DeBoesche, 85, said. “There’s such a caring thing going on here.”