Gio inspired Gio

Madison parents start their own foundations when kids have chronic conditions

Make it better

"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."

For more information

Lily's Fund for Epilepsy Research:
Gio's Garden:
Joey's Song:

comments powered by Disqus

More to read

Loading More Articles
No More Articles

Mama Madison: Three cheers for reading at the Wisconsin Book Festival

Do you have a little reader or an aspiring teenaged writer in your house? If so, you may want to venture to the Wisconsin Book Festival this weekend, to whet their appetite for wonderful words as well as your own.

Mama Madison: What's in a name?

When I was pregnant with my daughter, my husband and I had two names picked out. Upon her arrival we had not yet come to a conclusion on what that name would be. Everyone told us that when we saw her we would just know. We didn't.

Mama Madison: Eugster's is more than just a visit to the farm

At age 10 months, my kids have seen the zoo a lot already. I was a zoology major in college, and I have something of a zoo addiction still, so the twins (and their dad) are more or less condemned to a future rife with zoo visits.

Help for home-schoolers at the Madison Mentor Center

Home-schooling can be a lonely proposition. Even as a college professor, Juliana Hunt remembers struggling to find support to home-school her now-grown daughter. "I was always hoping to find like-minded people who were in the same position as me," she says. "I know that children learn best through a give-and-take, question-and-answer process of teaching and learning, but where do you find mentors who can make that happen?"

Mama Madison: Yummy Sprout is a wonderful resource

After sleep patterns, I think the next biggest parenting concern I have and hear about revolves around the topic of food. How can I make sure my kids are eating enough vegetables? Did I pack them a lunch that is healthy enough? What can I feed them after school that doesn't come from a box? How many gripes am I going to get about the dinner I'm about to prepare?

Mama Madison: Tips and tricks for baby air travel

As far as places to embark on Baby's First Air Travel go, Dane County Regional Airport is a pretty sound choice, especially at 6 p.m. on a Saturday night. My biggest fear was that my nine-month-old son would start screaming in the airport; my second biggest fear was that my son would start screaming and some of my former Epic colleagues would be around to hear it.

Mama Madison: Apple-picking time

The recent shift in the weather is just another sign that autumn is fast approaching. That means one of my favorite activities is just around the corner -- apple picking. My husband and I have been picking apples every fall since before our kids were born.

Mama Madison: Baby feeding recommendations

I have a lot of questions about what to put on my eight-month-olds' plates -- and, if I'm honest, a deep and abiding fear of putting the wrong thing there. Did I start them on solid foods at the right time? What's the deal with baby-led weaning -- how much self-feeding should they be doing? At what age should I give them potential allergens like shellfish or nut products?

Heartland Farm Sanctuary helps animals that help kids

Lily the potbellied pig arrived at Heartland Farm Sanctuary blind, lethargic and too overweight to walk. The children of Heartland's summer day camp program took it upon themselves to put the curl back in her tail.

Mama Madison: Back-to-school confidences

Is it just me or does each summer seem to go by quicker than the last? The end of summer is upon us and for many families this means the start of a new school year.

Mama Madison: Does back-to-school really mean a whole new wardrobe?

This past week, on the way to the grocery store, my daughter asked what I believed she thought would be a innocuous question, "Mom, when are we going back-to-school shopping?"

Mama Madison: Next generation of bloggers

Volunteering with the Young Writers Summer Camp this past week really helped me to remember how utterly creative kids can be when encouraged to come up with their own ideas and use their own words.

Mama Madison: Returning to the workforce

This past week I gleefully accepted an offer for new job on the UW-Madison campus. My kids are getting are older and I guess I've felt for a while now that it was time to figure out what would be next for me on the professional front.

Triathlons raise money to teach kids healthy habits

"Kids spend so much time in and around school, it's the only place where some have a chance to develop an appreciation for a healthy lifestyle," says Katie Hensel, founder and executive director of Tri 4 Schools.

Mama Madison: Kids will find their own passions in their own ways

"I'm envious, mom," said my twelve-year-old daughter as she hopped in the car after theater camp last week. "All the other kids in my group seem to really like, and to be really good at, singing, dancing and acting. But I think all those things are just okay."

Vital work is being done at the Lussier Community Education Center, from community-building to STEM skills

"People are looking to book space here all the time," says Remy Fernández-O'Brien, communications and facilities coordinator for the Lussier Community Education Center, a private, nonprofit community center on Madison's west side. "They want to throw their child's first birthday party here or hold a Girl Scout meeting. We're really busy year-round, but it's especially lively here in the summer."

Mama Madison: Parental dice rolls?

Last week, in response to the county-wide Sleep Safe, Sleep Well public health campaign that encourages parents to "share the room, not the bed" with their sleeping infants, Isthmus contributor Ruth Conniff penned a lovely opinion piece in defense of bed sharing entitled "Confessions of a Co-Sleeper."

Mama Madison: What constitutes a keepsake?

As much as I'd like to believe there is latent genius in my daughter's early finger paintings, I'm pretty sure her works are not distinguishable from those created by the pointer fingers and pinkies of thousands of other children from across the world.

Mama Madison: Young love

Seeing Romeo and Juliet this past weekend was a definite reminder that I need to prepare for something that might resemble a (near) West Side Story around our place pretty soon.

Mama Madison: What a mother fears most

All during childhood, we calmly tell our kids they don't need to be afraid of the dark, thunder or the monster under the bed. But it's pretty hard to keep your parental cool when your kid is about to embark on the one thing that terrifies you. I knew the problem wasn't really with him. It was with me.