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A fighting chance

Parents who find themselves wondering what to do after learning their children have an incurable illness can learn from one group's experiences.

By SHARON KENNEDY WYNNE
Published April 25, 2006

That mama bear's instinct to protect and change things has prompted activist moms to put together a handy manual of lessons they've learned, with tips on how to take action.

Moms like Elliott have been lobbying on behalf of their kids with spinal muscular atrophy, or SMA, but their organization's handbook can be used by anyone who has a child with any kind of illness or disability.

"I know I would have loved to have had this seven years ago when I was starting out," said Elliott, who founded the Tampa Bay chapter of Fight SMA. "The disease was something nobody knew about, so it was a really daunting task."

Now she has a busy list of fundraisers for research, including an annual golf tournament and Orlando House of Blues show by Widespread Panic lead singer John Bell, a family friend. And then there are annual trips to Washington to lobby Congress for things like newborn screening for SMA and funding for research into the disease, which is an inherited disorder that over time lays waste to muscles.

Even though it's the No. 1 genetic killer of babies, it didn't gain national attention until a mother in Richmond, Va., and her PR-savvy husband launched a media blitz in 1991, raising more than $5-million in research funding since then.

SMA affects about 25,000 people and receives about $14-million in federal research funding each year. But better-known diseases, such as cystic fibrosis, which affects about 30,000 people, received $117.2-million for research in 2003.

Elliott learned of the diagnosis when her daughter was only a year old. After that, "it took about a year to come out of our fog and get our wits" when they moved to Tampa to be near family.

She saw Joe and Martha Slay, the founders of the national Fight SMA organization, on NBC's Today show and decided to contact them and start the Tampa chapter.

Her attraction to the Fight SMA cause was that it was focused on research and a cure.

"There's no treatment, but at least we are doing everything we can," Elliott said. "It's kind of a healing process."

Hannah, now 10, is a thriving go-getter who uses a wheelchair but also swims and has sleepovers like any other fourth-grader. But SMA will continue over time to weaken her muscles as it devours nerve cells in the spine.

Meanwhile, her mother has a meeting today with her congressman's top aide for health care issues. It's that kind of dedication that has kept a disease like SMA from falling off the legislative radar.

The manual containing their lessons learned can help parents just getting a diagnosis of autism or rheumatoid arthritis or another illness.

Available at www.fightsma.com by clicking on "Fighter Mom," it tells how to hold a fundraiser, how to lobby Congress, and what's the most effective way to get help, publicity or awareness for your child's disability.

For Trevor Smith, whose daughter Joie has SMA and is in a prekindergarten class at Grady Elementary School in Tampa for physically impaired children, being a fighter mom has been almost therapeutic.

"As a parent, it brings you so much satisfaction that you feel like you are doing something," Smith said. "I'm not a researcher; I can't find a cure. But I can call the newspapers and TV stations to raise awareness or I can raise money for research or call my congressman to get funding for SMA. It makes me feel like I'm working on something, and something is happening.

"And then you aren't just focusing on 'Oh my poor daughter.' It lets you focus on the positives."

Smith envisions an army of politically savvy moms helping their own kids and joining forces to help all kids with disabilities.

The Tampa Bay chapter of Fight SMA made its first effort in early April with an Easter-themed event at a South Tampa park, inviting other fighter moms and dads such as those in the Freedom Playground Foundation, who lobby for playgrounds for disabled kids, and Power Soccer, a recreation program for kids in wheelchairs.

"It was a great feeling to pull it all together in a community," Smith said. "I can see a lot more moms recognizing themselves in this and going, 'That's me. I'm a fighter mom.' "

Sharon Kennedy Wynne can be reached at (727) 893-8595 or wynne@sptimes.com.

 FOR INFORMATION

To get a copy of the Fighter Mom manual, go to www.fightsma.com  and click on "Fighter Mom."  It costs $15 for shipping and handling. Or write to FightSMA, 1807 Libbie Ave., Suite 104, Richmond, VA 23226. 

[Last modified April 25, 2006, 12:03:01]