From The Isthmus, comes this story by Sari Judge.

“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.”

Read the whole story at Isthmus.com