When Wishful Thinking Is Not Enough

I don’t know if the thought is occurring to Sandy Lane, but it is to me. I’m just too embarrassed to ask.

Here she is at 35, married and the mother of two, sitting at the dining room table in her upscale home in Orange, talking about a disease named after a 19th century German doctor that someday may claim her 7-year-old daughter.

Part of her must be thinking she can’t believe she’s doing this. She can’t be talking about her daughter. This isn’t the way life is supposed to go.

But, there’s wishful thinking, and there’s reality. The reality for Sandy and Steve Lane is that Chelsea has a rare disease of the nervous system that is robbing her of some childhood pleasures and threatening to shorten her life.

To many parents, a diagnosis like that devastates them. They cope, but life becomes an ongoing trial that strips them of their energy.

That’s the way Sandy Lane was feeling for more than a year after Chelsea, then 4 1/2, began tripping and falling. Normal childhood stuff, perhaps, but not 20 times a day. She told her parents her legs were tired, that she needed help walking. Lane remembers thinking, “How can a 4-year-old’s legs hurt?”

After a series of tests, the Lanes got their answer: Chelsea had Friedreich’s Ataxia (FA), an inherited progressive disease that debilitates motor skills and often leads to serious health problems. Already, Chelsea has an enlarged heart.

While learning about FA, Lane says, she was surprised how relatively few fund-raising efforts spearheaded by parents were in play.

So she and her husband kicked into gear. Last May, they organized a “Walk for Hope and a Cure” that drew 600 people and netted $116,000 for FA research. “I had no idea what I was doing,” she says.

On May 20, they’ll hold the second walk, starting with registration at 8 a.m. at St. Norbert Church in Orange.

Forced to Speak Up

Because such things need publicity, Lane is forcing herself to talk about her daughter’s plight. She shows me a video of news coverage last year on which a reporter asks Chelsea, then 6, how she feels.

“I feel great, but I’m wobbly,” she says.

In that moment of innocence and honesty, I see what Lane meant when she said her daughter has something special in her. “I don’t know if the disease has made her stronger, given her this inner strength or if she was born with it,” she says. “People would tell me there was something special about her, even before she was diagnosed.”

A Muscular Dystrophy Assn. Web site says 5,000 Americans have FA, striking roughly two out of every 100,000 people. The National Institute of Neurological Disorders and Stroke reports that most people with the disease die in their early 20s if they have severe heart disease. Others can live much longer, although they will become totally incapacitated.

The Lanes know that, but Chelsea doesn’t. She knows only that she can’t run and jump like the other kids and that they help her get around at St. Norbert School in Orange, where she’s a second-grader. She knows that a classmate told her she prays for her every night, although Chelsea told her mother she doesn’t know why.

The good news, Lane says, is that National Institute researchers have said that gene-therapy advances might click with FA. The money raised at the walk last year, she says, eventually went to a Texas A&M; researcher.

In the meantime, Lane spreads the word about a disease she’d never heard of four years ago but which now consumes her family’s life. “She’s starting to fall with her walker,” she says of Chelsea. “So I see we’re so close to a wheelchair that it breaks my heart.”

Eventually, I get around to asking if, despite its ever-present reality, she can believe what’s happened.

“This isn’t the yellow brick road I thought it was going to be when I got married,” she says. “I was Dorothy, we were going to walk down the yellow brick road and have this happy family. You want your kids to be healthy, happy, have good futures and get married. This is not what you picture when you have kids.”

She isn’t bitter or plaintive. It’s simply the life--the one she, her husband, Chelsea and their 11-year-old daughter Brianna (who has no signs of FA) are living.

Her illness has revitalized the Lane family’s belief in the kindness of strangers. Still, Sandy Lane says, “I don’t say ‘Why me,’ but ‘Why Chelsea?’ I still don’t understand. I jokingly say that when I die, I want answers. I’m not angry, but I just want to know why kids get sick and have to suffer.”

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Dana Parsons’ column appears Wednesdays, Fridays and Sundays. Readers may reach Parsons by calling (714) 966-7821; by writing to him at The Times’ Orange County edition, 1375 Sunflower Ave., Costa Mesa, CA 92626; or by e-mail at dana.parsons@latimes.com.