More News and Events

News and Events Home

News Archive

View All Events

Videos

Watch our compelling patient stories and physician bio videos on American Family Children's Hospital's YouTube channel.

From UW Health

Go to UW Health News

Classes and Support Groups

e-Newsletters

News & Events

Argyle Family Raises $10,000 for Pediatric Epilepsy Research

Mandy and Dan Koch with Dr. Carl Stafstrom.Madison, Wisconsin - Mandy Koch is always busy - she describes her life as "full-time work, full-time mom and full-time school."

But over the past two years, in between running a daycare, taking care of her two young sons and taking massage therapy classes, the Argyle woman has taken up another important job: Fighting epilepsy.

Koch and her husband Dan recently presented a check for $10,000 to Dr. Carl Stafstrom, the chief of pediatric neurology at American Family Children's Hospital. Stafstrom said the funds will be used to advance his pediatric epilepsy research, which is looking into ways to control seizures using dietary approaches.

The topic - and doctor - are near to the Kochs' hearts because Stafstrom treated their son, Mathias, who was just 7 months old when he passed away Nov. 14, 2010, from complications of severe epilepsy.

"It's been a struggle these past two years with finding my joy," Mandy Koch said. "And this is a small part of being able to give back to all of you guys. And to all the families that may be struggling with epilepsy, hopefully they have a better outcome than what we had. It's just something that needs to be done and I'm glad we can do it."

Emerson Koch helps transport some of the hand-made blankets donated to the PICU.In addition to the check, the Kochs - including 5-year-old Samuel and 4-year-old Emerson - delivered nearly 100 hand-made blankets to the Pediatric Intensive Care Unit, where they spent days and nights with Mathias for much of his final two months.

"It meant so much to us when we were in the PICU," Mandy Koch said. "Mathias got a blanket when he was in the PICU. We still have that blanket and snuggle up with it, so we want to let other families have those blankets."

While the emotional comfort of fuzzy blankets will help ease the minds of some children and parents at the hospital, the money raised for research is crucial to doctors combating what Stafstrom called "a childhood scourge."

"Every day in the clinic, we deal with children who have epilepsy and seizures and try to help the children and the families to cope and improve their neurologic health, and it's a challenge all the time," Stafstrom said. "The only way that we're going to ever make real progress is through research, and that's what these funds are intended to do. And I promise you we're going to put them to really good use."

The Kochs raised most of the money through the inaugural Chunky Monkey Epilepsy Run, which was named after their nickname for Mathias and held in October at Yellowstone Golf Course in Blanchardville.

Approximately 300 people came out for the 5K and kids fun run on a typical Wisconsin fall day of clouds, rain, flurries, wind - and, fittingly, some rays of sunshine.

"Despite the weather, I sensed an incredible feeling of warmth," Stafstrom said. "That was a special time."

Holding a run in Mathias' memory was a natural decision for Mandy Koch: "Running is a passion of mine, so I knew pretty soon after he passed away that I wanted to do that for him."

But the response from the people of Argyle (pop. 857) and the surrounding communities in southwest Wisconsin was a surprise to the family.

"They've been absolutely astounding, as far as coming together and making sure we're taken care of and to support the race," Mandy Koch said. "Everybody was surprised with how many people showed up. It was really great."

Plans call for the addition of a walk for the 2013 event, and Mandy would like to add a half-marathon - her favorite distance - in the future. "I hope every year we can do more," she said of the Chunky Monkey Run.

The Koch family with three of the nurses who cared for Mathias in the PICU.Mandy Koch said her son was a perfectly healthy infant until he had a seizure when he was 5 months old, one so severe that he had to be transported to American Family Children's Hospital via Med Flight. From there, she said, they were back and forth between the hospital and their home as his condition would improve and then regress.

Sometimes epilepsy is genetic, Stafstrom said, but "in Mathias' case, we aren't sure why he had this bad epilepsy. ... We'll never know - we certainly looked hard to try to find a cause for Mathias, but couldn't.

"There's a lot that isn't known, in both diagnosis and treatment of epilepsy and in children, whose brains are 'under construction,' so to speak, they're developing on an on-going basis. It's all the more important, interesting and challenging to find why this happens.

"It is challenging. But it's the kind of things like this that give us the impetus to go forward."

That is the key for Mandy Koch, who is seemingly always moving forward.

"I don't want anybody else to have to lose their son or daughter," she said.


Date Published: 01/09/2013