Henderson family tries to raise money for ALS of Nevada after loved one dies of the disease

After losing her husband to amyotrophic lateral sclerosis, known as Lou Gehrig's disease, Robin Bell and her son Brendyn have tried to find ways to raise money for ALS of Nevada.

"The organization was great in providing us with respite care," Robin said. "I couldn't imagine going through it without them."

From the time symptoms began in 2007 to the time Charlie Bell was diagnosed in January 2008, he had deteriorated a great deal from ALS, a disease that affects the nervous system .

Robin described her husband as a vibrant man with a strong work ethic.

"He would never have been able to retire," Robin said. "He was too active. He couldn't sit still."

In 2007, Charlie thought he was just getting old when he started having health problems. He couldn't swallow or breathe comfortably. He was growing increasingly weak.

Finally, after he fell and cracked open his head in early January 2008, the doctors begin to connect the dots. Charlie had ALS and only months to live.

"Even in the final days, he had a sense of humor," Brendyn, 17, said. "We would be like, 'Stop being funny. This is a serious moment.' "

Robin remembers telling Charlie, who was instructed to keep his feet elevated to promote circulation, that he needed to put his feet up.

"He said, 'What's it gonna do, kill me?' " Robin said. "He couldn't talk, so he wrote it down. He could barely even write it, though."

Charlie died in July 2008 at 62.

In the few months Charlie lived with ALS, the Bells called on ALS of Nevada, which provided nurses for Charlie and emotional support for Robin and Brendyn.

Through grants and donations, ALS of Nevada is able to offer equipment and care for no cost. But those donations have gone down, leaving the group with limited opportunities to care for families with ALS.

Brendyn and Robin have been involved with ALS of Nevada, attending walks and fundraisers since Charlie died . But with so much need, Brendyn decided it was time to create a fundraiser of his own.

Brendyn partnered with Chevy's inside the Galleria at Sunset mall and Joe's Crab Shack, 4250 E. Sunset Road, to host two events on Nov. 13. Patrons could bring in a special flier, and the restaurants would donate 10 to 25 percent of the bill, excluding alcohol, to ALS of Nevada.

In addition, Brendyn, a balloon artist , went around to tables offering creations.

"All my tips were donated to ALS of Nevada," Brendyn said.

Brendyn raised about $300 in tips and estimated that the restaurants raised about $600. He had hoped to raise $1,000.

"So we fell a little short of our goal," Brendyn said. "But I did what I could."

In addition to raising money, Robin thinks the fundraisers are good for raising awareness.

"Not many people know much about the disease," Robin said. "Once you get it, it is a death sentence. You used to think cancer was the worst news you could get. It is still horrible to find out (you have cancer). But at least you knew you might have a shot depending on the cancer and if chemotherapy is an option."

Robin said when businesses, such as CVS Pharmacy, have collection drives that ask people to donate an extra dollar on top of their purchases, people might be more inclined to say "yes" if they knew more about ALS.

Brendyn wants to do another fundraiser, possibly another one such as the restaurant partnership.

"I think we will have a better response in the springtime," Brendyn said. "Restaurants are busier in spring. Hopefully I can do better at advertising and getting the word out."

For more information on ALS of Nevada, visit alsofnevada.org.

Contact Henderson/Anthem View reporter Michael Lyle at mlyle@viewnews.com or 387-5201.