Spaghetti fundraiser to aid boys with rare skin disorder / LJWorld.com

Archive for Sunday, November 15, 2009

By Edie Ross - The Hutchinson News

November 15, 2009

Hutchinson — Brenda Creed understands 11-year-olds.

So when her fifth-grade daughter, Julia, came to her one night, emphatic that the family had to “do something” for a local family facing hardships, Brenda first considered it a ploy to put off bedtime.

“At first I said, ‘Julia, go to bed,”’ Brenda Creed recalled. “But she was so passionate and the longer it went on, I finally said ‘OK, I’m listening.”’

Julia, a student at Holy Cross Grade School, had read a September article in The Hutchinson News about Carlos and Marcos Tharp — two boys about her age who are dying from an extremely painful disease.

Moved by the boys’ story and the tough financial situation their mother, Melissa Tharp, faced, Julia wanted to help.

Her idea to use birthday money to put on a small spaghetti dinner fundraiser for the boys has now grown to include several community groups and is expected to draw more than 250 people.

Julia is a normal fifth-grader in many respects. She likes sports, including volleyball, softball, swimming and skating. And she likes to hang out with her friends and have sleepovers.

She’s excited that her friends might read about her in the newspaper or see her on television if news stations come to the dinner — but she tries to hide it. She’s doing it for Carlos, 10, and Marcos, 9 — whom she recently met for the first time.

The brothers suffer from a form of dystrophic epidermolysis bullosa, a rare genetic disorder in which the microscopic collagen fibers holding the dermal and epidermal layers of skin together don’t work properly.

Their skin is so fragile the slightest touch or movement causes open sores and blisters. They have no immune system, cannot move on their own, and because the disease is progressive, things only get worse with each year that goes by.

Brenda, a hospice worker, and Kelly, an engineer at the Kansas State Fairgrounds, adopted Julia and her siblings in 2001.

They’ve worked to instill a faith in God in their children, and Brenda said through Julia’s passion to help the Tharp family, she’s seen that it has taken root.

“When people ask why you’re doing this, what have you told them?” Brenda asked Julia.

“That we do it because we’re Christian,” Julia said.

“It’s a great thing to watch, because people are so surprised that she’s doing this — that she’s driving the effort,” Brenda Creed said. “And when they ask her why, she’s surprised that they are surprised. To her, it seems obvious.”