Bone marrow drive adds more than 600 to national registry

By Jeremy Twitchell

Monday, Sept. 15, 2008 | 6:37 p.m.

Entering the crowded Zappos office lobby, Angel Sotelo stays firmly at his mother's side and watches the crowd with curiosity.

Though he is only 6, he understands what is going on. The people who fill this room on a Friday morning are there for him — him and five other Nevada children in need of a life-saving bone marrow transplant.

The Green Valley-based online retailer partnered with the Nevada Childhood Cancer Foundation for a bone marrow donor drive that they hoped would bring out 600 Nevadans willing to take a simple cotton swab sample and add their names to a national registry of potential donors.

Cancer Foundation representatives said Monday that they exceeded their goal of 600, but had yet to complete a final count.

For Angel Sotelo, one of the people crowded in this lobby or waiting in line could be the matching donor his family has been seeking since he was diagnosed with Fanconi anemia in 2004, when he was 3 years old.

"I freaked out," his mother, Tanya Sotelo, said. "What could I do? I freaked out. I was in shock. I was scared. I didn't know what to do."

Fanconi anemia is a disease that affects the blood-forming ability of Angel's bone marrow and could eventually cause it to fail completely.

For now, Angel looks and acts like any other 6-year-old. He's shy at first, then talkative when asked about something he knows well, like his friend next door, his coloring book, the computer games he plays with his brother or the time he just spent at the Cancer Foundation's Camp Cartwheel.

Sometimes, though, he is painfully reminded that something is not right.

"Sometimes his hips and legs hurt," Tanya Sotelo said. "It's not that bad, but sometimes it won't let him sleep."

"And the headaches," Angel Sotelo chimes in. "Don't forget about those."

Like many Hispanic patients awaiting a marrow transplant, Angel did not have a match within his family. The drive's organizers said they were particularly reaching out to the valley's Hispanic community to increase the likelihood of finding a match for Angel, because patients are more likely to find a match from donors of the same ethnic background.

Tanya Sotelo said she was hoping to find a matching donor last year, but it didn't happen. She said she struggles with feelings of being let down, but said her husband has been a rock and keeps her hoping.

"Each year that goes by, I get kind of frustrated," she said. "He's 6 now, and things aren't really that bad yet, but when he hits puberty and starts to grow. … I don't really even want to imagine him going through that.

"So every day that goes by, we just sit there and hope."

With the donor drive entering its third year and getting a huge boost from Zappos, which provided locations and funding to cover the $52-per-test cost, organizers say the chances of finding a match for the six Nevada children waiting for transplants are going up quickly.

"We continue to spread it out," Nevada Childhood Cancer Foundation President and CEO Jeff Gordon said. "We'll find the donors."

Gordon said the ease of donating bone marrow has also made finding donors easier. The process has become so successful that it's now an outpatient procedure. Last year's drive found a perfect match for one of the six children, but the potential donor wasn't interested in donating. Gordon said it was heartbreaking, but upon seeing the crowded tables and the line in the Zappos lobby, he was hopeful.

"We're excited," he said. "As we walked in today and saw this — this is great."

Most of the donors at this location were Zappos employees, who took a vote and chose to partner with the Cancer Foundation.

"I figure if I can help, what's a little bone marrow?" Zappos employee Melissa Crawford said. "I don't have many ways that I can help out. I can't help out financially, but this is one way that I can help. It's kind of a no-brainer."

Zappos employee Jerika Hartsock said the company has embraced the foundation because of the opportunity it offers to see a child's life change.

"You get to help children," she said. "It's something that you get to see in action at a young age and see how this helps them."

Tanya Sotelo said that before going to bed the night before, Angel told her that he prayed that he would find a match.

Looking at the busy lobby, she was filled with gratitude.

"You have appreciation for how great people can be," she said. "It's emotional, just because there are people out there that really do care, even for kids they don't even know. They're willing to take time out of their schedule and come do this to see if they can save a child's life. … Even if this year, it doesn't go for Angel, then maybe another little boy or girl will get that chance."

Jeremy Twitchell can be reached at 990-8928 or [email protected].