Do you know what neurofibromatosis is?
Many don’t, despite the fact that the disorder affects 1 in, 2500 people, said Jenny Perkins, Oswego resident and development director for NF Midwest.
“It’s a hard word to say, but it’s even harder to live with,” said Perkins.
Neurofibromatosis is a disorder characterized by tumors that grow on nerves anywhere in the body at any time. These tumors in turn cause a whole host of symptoms including (but not limited to) learning disabilities, scoliosis, seizures, depression, severe pain, cancer, disfigurement, deafness and blindness. It affects all races and ages and both genders equally. 50 percent of those affected have inherited it from an affected parent, and the other 50 percent are spontaneous occurrences.
Perkins is trying to raise awareness and funding for the disorder through a garage sale she is putting on at her home. All funds are being donated to NF Midwest.
“It is my hope that my garage sale will not only raise money for NF Midwest, but will help raise awareness of NF within Oswego and surrounding communities,” she said.
Perkins’ inspiration behind her garage sale is her nephew, Austin, who was diagnosed with a mild to medium form of NF at age three.
She says that at this time all of Austin’s tumors are internal, which means no physical disfiguring, so many do not know he has it. Yet he has symptoms of learning disabilities and a tumor on his optic nerve, which doctors hope does not grow and causes blindness.
“NF is progressive, so tumors and symptoms do get worse as time goes on. So many others have much more severe forms of NF that cause their daily lives to be a struggle,” said Perkins.
The garage sale will take place on Friday, August 24 and Saturday, August 25 from 8:30 a.m. – 2:00 p.m. at 216 Willowwood Dr., Oswego.
Perkins said she’ll be selling a lot of home décor, appliances, and some brand new samples from Ganz, which is a huge giftware company. Ganz is the group that makes Webkinz, along with giftware, jewelry and home décor.
Her goal is to raise $1000 to donate to the organization.