CRANBERRY TWP — The Elks Lodge filled with visitors Saturday in the name of building a community for a niche group that needs it.
As her senior project at Seneca Valley High School, Maddie Karchut, 18, organized a spaghetti dinner that lasted all afternoon Saturday and attracted a large crowd.
Maddie said she was inspired by a family friend who has a craniofacial syndrome to use the event to raise funds for the Children's Craniofacial Association. She was overwhelmed by the showing Saturday.
“It's amazing to see families, friends and people you've never seen before coming together like this as a community,” Maddie said.
The association puts on events around the country to help families with children who have craniofacial conditions. That includes everything from medical financing aid to regional conferences.
Those conferences can be a huge help, according to several families present at the dinner Saturday. Craniofacial is a catch-all term that includes a wide range of abnormalities of the face or head. Those abnormalities stem from many different conditions, several of which are incredibly rare.
Tanya Thorpe, whose 19-year-old daughter Kaylee was born with Apert syndrome, said the association's events are helpful.
“It just helps us get to know people who are going through the same thing,” Thorpe said. “It's good to not feel alone.”
Ashley Grice, mother of the 1½-year-old Sarah, said Saturday's event felt like it was doing the same community building locally as what occurs in the association's conferences. Sarah has something called 9p deletion syndrome — another rare disorder — and Grice said Saturday's event was awesome.
“There's a lot of people here,” she said. “I didn't expect this.”
All the families present shared common stories of frequent surgeries. Many of the associated conditions require lots of medical procedures as a child grows up, but then life normalizes in adulthood after their bodies stop developing.
Bethany Kearns, mother of Asher, said her son has had six surgeries so far. That's one for every year of his life. He has Treacher Collins syndrome, which on average requires about 24 surgeries by adolescence.
Kearns previously put together an annual fall picnic in Pittsburgh for craniofacial awareness and was glad to see word spreading in Cranberry.
“It's nice to know you're not the only person going through something,” Kearns said. “Without technology and these organizations we would have possibly gone for our entire lives without meeting someone else with Treacher Collins syndrome.”
Kearns hopes craniofacial syndromes become more commonly understood.
“They're just kids like everyone else,” she said.