Fighting Illnesses With Moral, Monetary Help

Two women battling separate, debilitating lung diseases at the prime of their lives have discovered that family and friends are determined that they will not struggle alone.

This column is not so much about those two women as it is the two women now devoting their lives to being there for them. One is a close friend, the other a mother.

Kym Verrilli, 27, of Irvine, was best friends with Elisha “Easter” Allen at Norco High School in Riverside County. They were fellow cheerleaders.

“She was just incredible,” Verrilli says of those days 10 years ago. “We were all aware of what she was going through, yet she had all this enormous energy. More energy than anyone I’d ever met.”

Allen was born on an Easter Sunday, and the name has stuck. She was also born with cystic fibrosis, but was able to live normally most years. She was active in Girl Scouts, raised farm animals and studied dance. She was a cheerleader from eighth grade through college.

Four years ago, while living in Huntington Beach and working as a bookkeeper, Allen became a single mother. Though her son, Gage Christopher, is healthy, Allen has suffered serious medical setbacks since then. She’s now homebound and living with her parents in Hemet, who are also helping with her son. Arrangements are being made for a lung transplant, but medical costs will go $375,000 beyond the limit of her insurance coverage.

Which is why Kym Verrilli has been active trying to raise money any way she can--through local community groups, schools, even her daughter’s Brownie troop. Her class’ 10th high school reunion is coming up, and Verrilli convinced the reunion committee to turn over half its ticket proceeds to Allen.

Verrilli has taken on this cause, she says, “because I can’t imagine my life without my friend. I love her.”

For Pat Harrington of Coto de Caza, devastating news hit even closer to home. Last year her daughter, who is in her mid-30s, became ill and suffered shortness of breath. Harrington began combing the state to find a specialist who could diagnose what was wrong.

She learned through a specialist at UC San Diego that her daughter was suffering from LAM (which stands for lymphangioleimyomatosis), a progressive, fatal lung disease known to strike only young women. I’ll honor Harrington’s request not to mention the name of her daughter, who prefers to keep this private.

Harrington discovered that doctors know very little about this disease. Except that probably thousands of women who have it have been misdiagnosed. That’s probably because proper tests to detect it are expensive. She also discovered that not much is being spent to do anything about it.

But a few years ago, a small group of women whose daughters suffer the disease formed the LAM Foundation to raise money for research. Harrington joined and decided to devote herself to the cause, starting in her own community. She told me:

“We’ve only lived in Coto de Caza for four years, but I asked some friends here what they thought about us putting on a golf tournament to raise money for the foundation. And here we are.”

“Here” was the first tee at the Coto de Caza Golf & Racquet Club under bright sun Monday morning. Harrington and her friends came up with enough golfers and corporate sponsors to raise more than her $35,000 minimum goal. That was the amount of money she was told would pay for one researcher to look into LAM for one year. The foundation in its infancy has raised $400,000 so far--with all the money going to research.

“We have no paid staff at the foundation,” Harrington said. “Everything we’ve done has been just word-of-mouth. We’re all just mothers or friends who care about these young women.” A foundation newsletter helps to hold them together.

Harrington’s daughter “has just been incredibly terrific through this whole ordeal,” Harrington said. “But it’s a very lonely experience. It means a lot to her to see so many people show up here who care.”

It’s a good bet she’s proud of her mother too. And that Easter Allen is proud to have a fellow cheerleader stand by her.

Halo Hero: Anybody besides me miss seeing Doug DeCinces at third base for the Angels? Since DeCinces retired in 1987, he has remained active in Orange County community affairs. He’s served on the board of the Orangewood Children’s Foundation since 1988. He sponsors an annual golf tournament to raise money for the cause, and each year spends part of his Christmas Day with the children there. DeCinces also participates in numerous fund-raising events for other children’s causes.

Last week, DeCinces was among those honored by Children’s Hospital of Orange County’s Padrinos support group with its Heroes of the Heart award.

Dream Boat: I rarely use people’s names in this column without first talking to them. Usually it’s the only practical way to do research; also, I don’t like to catch people off guard. But that’s what happened with Cheryl Meeks of Orange, and this time she forgives me.

I mentioned last week that Meeks had won honorable mention in a dream vacation essay contest sponsored by Travel & Leisure magazine. I tried to reach Meeks ahead of time, but simply was unable to get a phone number or address for her. But her essay on sailing her 40-foot ketch to the South Seas was so beautiful I went ahead and quoted from it anyway.

It turns out Meeks had not seen her piece quoted in the magazine. But she does read The Times, and was shocked to see her name in this column. It was the first time she learned that her essay had been chosen among the honorable mentions to be printed in the magazine.

It turns out Meeks has been pretty busy lately. She just had a baby, and she’s putting the final touches on her first novel. If it reads anything like her piece for Travel & Leisure, I’m going to want to read it. By the way, I asked her, did she really own a 40-foot ketch?

“No way,” she said laughing. “That whole thing was just a fantasy.”

Bob’s Time: You’ve probably read that Republican Robert K. Dornan still isn’t giving up his fight for the seat in the 46th Congressional District to victor and current Rep. Loretta Sanchez. Dornan got himself a little free publicity in Time magazine this week with a letter to the editor that rehashes some of the controversy. He signed it “once and future Congressman.”

Maybe so. But for now, he’d better keep his day job.

Wrap-Up: When some people read a column about fund-raising for a cause, they call me, a little frustrated that I haven’t provided an address or phone number. They either want to make a donation or contact someone to learn more about it. So:

The LAM Foundation address is 10105 Beacon Hills Drive, Cincinnati, OH 45241 (513-777-6889). The National Transplant Assistance Fund is accepting contributions for Easter Allen at NTAF: Friends of Easter Allen Transplant Fund, P.O. Box 258, Bryn Mawr, PA 19010 (610-527-5056).

Jerry Hicks’ column appears Tuesday, Thursday and Saturday. Readers may reach Hicks by call-ing the Times Orange County Edition at (714) 966-7823 or by fax to (714) 966-7711, or e-mail tojerry.hicks@latimes.com