The enormous task of helping a little boy

Riverside family battles to raise funds to combat rare disorder

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By BOB UPHUES

About two-and-a-half years ago Riverside resident Gelse Tkalec noticed that her son, Ethan, was tripping and falling a lot. Ethan was still not quite 3 years old, but the unsteadiness on his feet concerned his mom.

"We took him to the pediatrician and they said, 'It's nothing.' But I had a sinking feeling that never died," Gelse Tkalec said.

Then more things. Ethan couldn't jump or run very fast or get up and down stairs easily.

It wasn't until July 2008 that Gelse and her husband, John, learned what was wrong with 5-year-old Ethan. He was diagnosed with giant axonal neuropathy (GAN), a terminal neurological disorder that slowly attacks the central nervous system. How quickly the disorder manifests itself depends entirely on those diagnosed.

"They may reach a plateau every five years or hit three plateaus every year. You just don't know," Tkalec said.

The disease is so rare that it is considered an "orphan" by the pharmaceutical industry, meaning that so few people suffer from the malady that no research is being done by those firms to create medications or prevent it.

"We felt like we were hit by a train," Tkalec said. "Ethan is our only child and he's such a wonderful boy. We weren't sure what we should do with this information."

But it didn't take the Tkalecs long to decide. Through searching the Internet, Gelse Tkalec hooked up with Rexford, N.Y., resident Lori Sames, who started Hannah's Hope Fund in May 2008, just two months after finding out her 5-year-old daughter had GAN.

Quickly realizing that no cohesive work was being done on GAN, Sames began assembling a network of doctors working in relative isolation on the disorder. She contacted the French doctor who in 2000 had identified the gene that causes GAN. Sames then found a doctor in Utah who was doing genetic sequencing to find the mutation in the GAN gene.

By August 2008, Sames brought 20 research scientists together in Boston for a symposium on GAN and in October met with representatives from the top gene therapy lab in the country and Hannah's Hope began funding gene therapy research at the University of North Carolina.

From May through December, Hannah's Hope raised $440,000 for GAN research.

"It's been all-out war," said Sames, who explained that the money had been raised at a variety of events - from bake sales to cocktail parties to a 5K run.

The Tkalec family is just beginning their campaign to help fund GAN research and has partnered with Hannah's Hope Fund to help spread the word. Locally, the fundraising effort begins at an event in FitzGerald's in Berwyn on Wednesday, May 13.

To date, they've raised $10,000. And despite the fact that Hannah's Hope Fund raised close to a half million dollars last year, the goal is to collect $2 million over four years, Sames said. That can't be done with lemonade stands.

Sames said the organization's focus is to begin targeting philanthropists such as Bill Gates and seek large foundation grants.

"Our Phase II fundraising is to get in front of people with financial ability to help," Sames said.

The premise of the Tkalec fundraiser is simple. Ethan loves music and singing and had expressed a wish to sing with a band. A friend connected Gelse Tkalec with Becca Kaufman of Singer Spotlite Productions, which hosts monthly singer showcase events at Fitzgerald's.

While Ethan won't be onstage at the May 13 event, he was taped singing with the band in a studio. The songs included some of his favorites - You Are My Sunshine, The Alphabet Song and Do-Re-Mi from The Sound of Music.

"He loved it," Tkalec said. "He was so happy, and surprised, when his voice came out of the mike. He's a singer. He's loved singing ever since he was little."

Tkalec said she'd like to eventually have one or two signature events a year to raise funds for GAN research, with 100 percent of the funds going toward that effort.

"As horrific as it is to hear a child has cancer, there's treatment available," said Sames. "When you're told it's a neurological genetic disorder, there's nothing, and Hannah's Hope is changing that. But we need help. We can't do it alone."

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