Bentleyville girl cooks up benefit
By Chris Buckley
Published: Tuesday, Feb. 11, 2014, 1:06 a.m.
When Hunter Kalchthaler first saw an online video about Tyler and Luke Clegg's rare condition, the Bentleyville teen decided she had to do something to help.
That led the 17-year-old girl to organize a spaghetti dinner fundraiser that will take place noon to 5 p.m. Sunday in the Bentleyville Social Hall on 908 Main St. The cost is $7 and comprises spaghetti, salad and bread.
Hunter is the daughter of Sharee and Adam Kalchthaler.
Hunter learned of the boys' plight from a Facebook interview, her mother said.
Tyler, 11, and Luke, 5, who reside in Rostraver Township with their parents, Jill and Brian, have a rare chromosome defect, Med 23.
There's only one other boy – living in Algeria – who is similarly afflicted.
Hunter has tetrasomy X, a rare condition in which she has double the normal X chromosomes per gene. The disorder can cause mental and physical problems. Sharee Kalchthaler said her daughter has multiple disabilities.
Hunter, who is high functioning, was diagnosed at age 2 – one of only 40 females in the world with the condition.
Hunter and the Cleggs are patients of neurologist Amy Goldstein at Children's Hospital of Pittsburgh of UPMC. Jill Clegg, the boys' mother, credited Goldstein with helping the families meet.
Clegg said she found out in December that Hunter was planning the fundraiser.
“Sharee just totally blew me away, because she said this is what we really want to do for you,” Clegg said.
“Then, I found out it was Hunter's senior project. That takes a lot of dedication from a teen. We were very touched by that.”
Hunter, who attends cyber school, is handling all the details for the fundraiser.
She has been busy preparing sauce and meatballs. Come Sunday, she will be cooking, serving and greeting those who come to enjoy the home-cooked meal.
Hunter has recruited volunteers, including members of the Leo Club at Bentworth High School, a Belle Vernon Boy Scout troop and other Bentworth students. Sharee Kalchthaler will volunteer at the fundraiser.
Proceeds will benefit the Clegg family's efforts to expand their house to better accommodate the boys.
The family hopes to build an additional bedroom and a larger, handicap-accessible bathroom.
Currently, the Cleggs use their dining room to store medical equipment, including the boys' wheelchairs.
Sharee Kalchthaler said the next goal will be to recruit a local contractor willing to donate time, materials or both for the project at reduced cost.
The Cleggs have also have a son, Noah, 9, and Luke's twin brother, Aiden. Noah and Luke do not have the chromosomal disorder.
The family has built a makeshift ramp between the garage and the bathroom, but the couple has to push the boys' wheelchairs up their driveway.
Jill Clegg met Hunter and Sharee Kalchthaler once. But Hunter will meet Tyler and Luke for the first time Sunday.
“I think it will be great,” Clegg said. “Hunter is just a really sweet and loving girl. She seems very excited to meet the boys and vice versa.”
Likewise, Sharee Kalchthaler said Hunter is excitedly awaiting the chance to meet Tyler and Luke.
“She is ecstatic, but Hunter is very shy, too, so I hope it works out well,” Sharee Kalchthaler said.
Sharee Kalchthaler said she feels a connection with Jill Clegg.
“You can say you understand, but you don't understand until you've been in their shoes,” Sharee Kalchthaler said.
“Every day is a different challenge, no matter whether big or small. Society has not yet accepted people with mental handicaps.”
Sharee Kalchthaler said that as a mother, “You wouldn't change it for the world, but it is definitely a challenge.”
Chris Buckley is a staff writer for Trib Total Media. He can be reached at 724-684-2642 or firstname.lastname@example.org.
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