Madison parents start their own foundations when kids have chronic conditions

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.