Fundraiser planned to help local boy battling disorder
As the days become sunny and warm, many children will spend time playing outside and enjoying the summer weather.
This will not be the case for 2-year-old Xander Newmeyer of Connellsville.
In December 2011, when Newmeyer was only 20 months old, he was diagnosed with ectodermal dysplasia. According to the National Foundation for Ectodermal Dysplasis (www.nfed.org), the disease is an inherited disorder that involves defects in the hair, nails, sweat glands and teeth.
“We went to the doctor at 18 months, and Dr. Geshay was going to cut his gums to release them (his teeth), and he did an X-ray, and he saw the bottom ones were pointed,” explained his mother, Kimberly Newmeyer. “He (Dr. Geshay) said to go to Children’s Hospital (where) we got the blood test results.”
Parents Kimberly and Terry Newmeyer are hoping to find answers and support at the 2012 National Family Conference for the National Foundation for Ectodermal Dysplasias that will be held July 18 to 21 in Orlando, Fla. Because their son was diagnosed only six months ago, the family needs help with raising about $2,000 to cover the cost of the hotel and airfare.
This is why the Bullskin Township Volunteer Fire Department is helping the family with a spaghetti dinner fundraiser at the fire hall from 4 to 8 p.m. June 8.
According to Brad Gillot, the president of the Bullskin Township VFD, his fellow firefighters were on board with the fundraiser from the beginning.
“Once I met with my guys, there was no hesitation in doing this for the family,” he said.
Kimberly Newmeyer expressed how important attending this conference is for her family.
“It is hard because he can’t go outside. He can’t sweat, so if he wants to go outside and play and if it’s hot, he can’t. He has no hair in his nose, and he gets respiratory colds a lot, and his eyes water,” she said. “He is just so little, and it’s hard for him to tell you what is wrong. It is hard because I want to do all I can do for him.”
She also said that at the conference she hopes she is able to meet with experts and learn treatment options for him and to find other parents who also have children with ectodermal dysplasia and gain support and information.
Through the battle with her son’s disorder, Kimberly Newmeyer has learned a lot about her son and wants other people to see him the way she does.
“Every time I say it is a genetic disorder, people think it affects his intelligence. He is really smart, so caring and kind and loving, it has nothing to do with what he looks like,” she said. “He is no different than anybody else because he looks different. I hope people are aware there is such a disease as ectodermal dysplasia.”