BENTLEYVILLE – Hunter Kalchthaler is excited about her senior project, and her enthusiasm obviously has been contagious.
She’s managed to recruit a small army of friends and family to volunteer their time and energy for a benefit spaghetti dinner on Feb. 16 that she is organizing for two Belle Vernon youngsters who were born with an extremely rare chromosome defect.
“I can’t wait to meet the boys,” Hunter said.
And that’s understandable.
Hunter, too, has a rare chromosome disorder called Tetrasomy 8 or 48 XXXX, which is the presence of four X chromosomes instead of two. Only 40 cases had been documented worldwide when Hunter was diagnosed in 1998.
The disorder can cause developmental delays and mild to severe mental and physical health problems, and heart defects are common. Hunter is considered high-functioning, but the 17-year-old Bentleyville girl has endured some very difficult times, and new health issues can occur at any time.
“Hunter has always played by her own rules,” said her mother, Sharee Kalchthaler.
When Hunter was born on Sept. 19, 1996, she suffered a small stroke and uncontrollable seizures. She was transferred from St. Clair Hospital to the neonatal intensive care unit at Magee-Womens Hospital. She also had her first haircut shortly after she was born because of the number of small tubes that were attached to her head.
At age 2, she was placed in a full-body cast to correct her hip dysplasia. Not once, however, did she cry or fuss.
“She has a high tolerance for pain,” Sharee said. “All we did was feed her and change her diapers.”
Hunter was quickly enrolled in SPHS Care Center’s early-intervention program and has been taking occupational, physical and speech therapy since she was 9 months old, first at California University of Pennsylvania and now at Washington Health System’s Children’s Therapy Center. Even so, she did not start walking or talking until after her second birthday.
So, it’s easy to understand why Hunter and her family, which includes her father, Adam, and her brother, Max, 13, and her extended Bentleyville family are so eager to help Brian and Jill Cleeg. Two of the Cleegs’ four sons, Tyler, 11, and Luke, 5, are unable to walk, talk or feed themselves.
The boys were diagnosed in May 2013 – almost three years after their initial consultation in the undiagnosed diseases program at the National Institute of Health – with Med 23, an intellectual gene disability that results in delayed white matter in the brain in the early years of life. It also has caused muscle stiffness, incessant screaming, spasticity of the extremities, gastrointestinal issues and developmental delays in the boys.
The defect is so rare and new to medical science that it has been identified in just one other family. That diagnosis was made in 2011 in Algeria.
In Med 23, both parents must carry some type of the mutation of the same gene, and any child has a 25 percent chance of inheriting the disease. The Cleegs’ other two sons, Noah, 9, and Luke’s twin brother, Aiden, are healthy.
Jill Cleeg could not be reached for comment, but on the family’s website, http://hope4tylerandluke.com, she wrote, “We are excited to begin the awareness process and search for a cure. With that said, we totally get that Tyler and Luke may never be ‘normal.’ But let me say this: They are very happy boys. Always smiling. Fun to be around. They love other kids, animals, water and life. … They are very special little boys who give us happiness daily.”
That’s exactly how Hunter’s family feels about her.
Hunter has a quick wit, enjoys Wii bowling, swimming at Pine Cove Beach Club in Charleroi and selling early-bird specials during bingo at Bentleyville Volunteer Fire Department, and she’s become a pro at helping with spaghetti dinners hosted by the VFD, where her pappy, Ron Sicchitano Sr., is the chief.
“Every time we do meatballs, she helps roll. We’ve done a lot of these,” said Sicchitano, who expects 1,400 to 1,600 people to attend the fundraiser for Tyler and Luke. Volunteers plan to make 80 pounds of spaghetti and nearly 30 gallons of sauce.
Hunter has been enrolled in Agora Cyber Charter School since fifth grade, and she works twice a week at ARC, where she does bulk mailings, assembles blood-draw kits and answers phones.
She also formed a team that participates annually in the March for Babies, sponsored by the March of Dimes, and her family had T-shirts made for the spaghetti fundraiser that say “Hunter’s Rockin’ Rare Chromosome Team.” Money raised will be used to make modifications to the Cleegs’ home so the boys can better maneuver.
“We realized they needed help, and we’ve been there, done that,” Sharee said. “Whatever we can do to help, we will help. A lot of local people have stepped up to help out.”
A benefit spaghetti dinner for Tyler and Luke Cleeg of Belle Vernon will be held from noon to 5 p.m. Feb. 16 at the Bentleyville Social Hall, 908 Main St.
Cost is $7 for adults and $5 for children. Takeout will be available. Tickets can be purchased in advance by calling 724-350-5982 or at the door. A Chinese auction also will be held.
Proceeds will be used to make home modifications for the the boys, who have a rare chromosome defect.
For more information about the boys, visit http://hope4tylerandluke.com. The dinner is being organized by Hunter Kalchthaler, 17, of Bentleyville, who was born with another rare chromosome disorder.