"When your child suffers from a chronic condition like epilepsy, you never feel like you have control, " says Anne Morgan Giroux. "You can't control what drugs might work to control the seizures or even control what a typical day might look like. I think we started Lily's Fund to be able to gain control over something."
And while starting your own charitable organization may sound like more work added on top of a time-consuming situation, several Madison families have found that it's a very positive step.
Giroux's daughter Lily, now 17 and a junior at Madison West High School, was diagnosed with epilepsy when she was 2 years old. Anne and her husband, Dave, spent much of Lily's childhood experimenting with medications and procedures to keep her atonic seizures at bay. In the fall of 2006, they noticed an article describing the work a team of UW-Madison researchers was conducting on epilepsy.
"It came at a time when Lily's seizures were controlled, but we were at the end of the line for meds," says Giroux. "With seizures, control can be fleeting. You walk on eggshells all the time. We needed to know that there was more coming down the pipeline."
The story motivated the couple to contact the scientists. "After meeting with them," says Giroux, "we felt absolutely inspired. There was brilliance going on there, and no one knew about it. We felt it needed our support."
Early the next year, the family launched Lily's Fund for Epilepsy Research, an all-volunteer organization dedicated to supporting cutting-edge research at the University of Wisconsin-Madison. In January 2009, they hosted the first Lily's Luau - a now annual Hawaiian-themed party to raise funds for, as well as awareness of, the research that "was happening right in our backyards."
"When I see hundreds of people coming together at the luau I am so hopeful," says Giroux. "It's kind of like that quote from The Lorax, 'It may seem small, but it's not about what it is; it's about what it can become.'"
What "it" has become for Colleen Penwell, Giroux's "copilot" in luau planning, can best be described as therapeutic. Penwell's daughter, Grace, 14, suffers from Dravet syndrome, a rare and intractable seizure disorder. For years, Penwell had resisted getting more involved in the epilepsy community.
"We were in crisis mode for so long. I had put my insulation up," she says. "But when a friend suggested we go to the first luau, I agreed. Halfway through the party they showed a video of Lily's story. Much of it mirrored our own lives; I got so emotional I had to leave the room. It was at that moment I realized I couldn't ignore the need to get involved any longer. Lily's Fund came into my life at the exact time I emotionally and physically needed to sink my teeth into something."
For Charlotte Deleste and her husband, Ron Giordan, the inspiration to start Gio's Garden, a Middleton-based respite-care center for special-needs children, came from a place of exhaustion and anger. Their 7-year-old son Gio has Lennox-Gastaut syndrome, another rare form of childhood epilepsy that had caused him to seize as many as 80 times a day.
"With Gio's constant seizures, a new colicky baby and my need to wake up at 1:30 a.m. each day [Deleste is a Channel 3 morning anchor], we weren't getting any sleep at all," Deleste recounts. "We were so beaten down. But at some point you need to decide if you are going to just lie on the floor, or use that last tiny bit of energy to come charging back."
And the couple knew exactly what they wanted to charge back with. They understood on the most personal level that what parents of kids with significant health issues need is a break from the constant vigilance. But, as Giordan says, "When you have a child like Gio, you can't just hire the 12-year-old babysitter down the street. Most adults can't watch him."
Thanks to Deleste and Giordan's tireless fundraising, Gio's Garden opened earlier this year, providing up to 16 hours a month of therapy and respite care to families with children under 6 who have significant developmental and physical delays.
"I was told 'no' so many times when I reached out for help," says Deleste. "I couldn't stand to see another family spiral down the way we had. I needed to do something that would help other families get back up."
>Mike Gomoll's 4-year-old son Joey, who also suffered from Dravet syndrome, died in March 2010. In his memory, Gomoll, a Sun Prairie resident, started Joey's Song, a series of compilation CDs featuring rare and unreleased music from well-known artists like the Cowboy Junkies and Rosanne Cash. Proceeds from the sales are donated to organizations focusing on epilepsy research and special-needs children.
"I needed to do this. It's my therapy," says Gomoll. "When I'm at a cocktail party and people ask what I do, I can tell them about Joey's Song. It's given me the chance to talk about my son in an incredibly positive way.
"Doing this has kept me okay," says Gomoll. "You can go two directions when something like a child's death happens. And I needed to go in the direction of doing something positive. When I hand over a check after a benefit concert, the feeling is indescribable. I need to know I am making life for families with kids like ours better off."
Like Gomoll, Giroux insists the tremendous time she devotes to Lily's Fund is energizing. "Having a child with a special need can be exhausting," she says. "But seeing so many people's willingness to dive in and help us in any way they can recharges my batteries like nothing else."
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