Take a walk, save a life

Everyone seems to tap friends for money to cure AIDS, leukemia, or breast cancer – or in my case, cystic fibrosis.  Lately, I’ve been raising funds to support a walk-a-thon sponsored by the Cystic Fibrosis Foundation. Why CF? Because my 22-month-old neighbor Lily has it.

When I come  home from work, if Lily is playing outside with her mom, Lara, she blows me kisses with her chubby little fingers. She runs at me as if on the verge of falling she’s so eager to see and do everything. Like a magpie, she loves any shiny object I happen to be wearing. She has blonde flyaway hair and a plastic tea set she points to excitedly any time I come to visit.

I love Lily!

When Lara told me that Lily had CF, I bit back tears. “I’m so sorry,” I said. Words would never be enough. I was determined to do something.

CF is a cruel killer. Typically, its victims are young. Over time, mucus builds up in the lungs causing infections that are ultimately fatal. The defective gene that is responsible for CF can also affect digestion and cause the pancreas to malfunction.

I knew one family that lost two daughters to this disease, one in her teens, the other in her early twenties. They are buried side by side not far from my daughter Maya at Oakmont Cemetary. Maya died of an accidental fall from a horse, not CF, but once you have lost a child you realize – deep in your bones – it doesn’t matter how your child dies. What matters is finding a way to survive  and be there for your other kids if you’re lucky enough to have any. Eventually, I rebuilt my life. But I hate the idea of  other parents having to join the fraternity – or of children dying before they have a chance at a full life.

That’s how I found myself with a white T-shirt displaying an iron-on decal saying “Team Lily” emblazoned on the middle of my chest walking along the San Francisco Bay with a ragtag group of friends and neighbors last Saturday morning. Our team wasn’t the biggest – we couldn’t match Team Genentech – but we weren’t the smallest either. In the group photo, about 40 of us crowd together behind a row of strollers and dogs at East Beach in Crissy Field. We set off on our three-mile walk in high spirits, quickly separated by the hundreds of other walkers, and dozens of strollers, wagons, and canines that promenaded up to Fort Point in a colorful and unruly mass.

Lots of teams were named after kids that parents are desperately hoping will be saved. The Cystic Fibrosis Foundation, funded by the generousity of walkers and their supporters, has already helped to find treatments that can extend life into young adulthood – age 37, on average. I’m sorry. That’s just not good enough. I want Lily to live to be an old lady – one that dusts off her plastic tea set and brings it out to play with her grandchildren. I want her laugh to last longer than three decades. I want to see her run into her future as confidently as she runs up the sidewalk toward me with mischief written all over her face.

Last I checked, “Team Lily” had raised more than $7,000. Multiply that by the dozens of other teams at the “Great Strides” event and you’ve got a serious investment in hope, in healthy kids, and in parents who can breathe a little easier knowing that they are not alone in this fight.

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2 Responses to “Take a walk, save a life”

  1. Mary Jane Brimhall Says:

    Dear Eleanor,
    Thank you for so beautifully presenting Lily.
    Mary Jane

  2. Britt Says:

    What a beautiful story!!!!!!!!!! All my love to Lily and her fantastic mama and papa. I wish I had been there.

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