ARGYLE - After her son Mathias died of a rare form of epilepsy in November 2010, Mandy Koch ran.
The 34-year-old Argyle mom had always been a runner, but now she needed it, desperately.
"It was the only thing that kept me sane," she said. Going on runs distracted her from the wretchedness of watching helplessly as Mathias suffered. Medication had no effect. He was only seven months old when he succumbed to the disease.
"There was nothing I could do," Koch said. "It's a place a parent should never be."
His legacy lives on in Team Mathias, an effort Koch and her husband, Dan, started to remember Mathias and bring awareness to epilepsy. Team Mathias is a growing group of the Koch's friends and family - or anybody inspired to join in - and participates in challenges in his memory.
Two weekends ago, a 12-member team completed the Ragnar Relay, a 200-mile overnight run from Madison to Chicago. The intense relay race started Friday morning, June 8, and reached Lincoln Park along Lake Michigan in Chicago at about 6 p.m. the following day.
Donations on the team's behalf to the Epilepsy Foundation of Southern Wisconsin are being accepted through June 30 at Woodford State Bank locations. They're looking to match the $3,000 they raised last October at the Whistlestop Marathon in Ashland.
Team Mathias traded spots between two vans and the trail for almost 34 hours for Ragnar, each member taking turns driving, running or trying to slip in a quick nap.
Koch ran the final eight miles and remembers thinking to herself, "I can put one foot in front of the other because I have the choice to do that."
Mathias didn't have a choice. She thinks of this often when she's working on a Team Mathias challenge: "If he could go through what he had to go through, I can accomplish anything."
Mathias, the Koch's third son, had his first seizure at five months while the family was on vacation up north. It came as a complete surprise. He'd been a happy baby.
"Mathias was well known for melting hearts," Koch writes on the Team Mathias blog, teammathias.com. "... Mathias had many favorites: he loved to be read to and snuggled with, and listen to music. His favorite song was 'You Are My Sunshine.'"
Within two months of his first seizure, he died. There's no cure for the rare seizure disorder he had. It wasn't even discovered until 1995, Koch said, and only 100 cases of it have been documented worldwide since then.
"Cure" is a word conspicuously absent from the purple Team Mathias T-shirt Koch wears. Instead of the typical "Racing for a Cure" slogan, the family chose "Racing for an Answer."
A cure is part of that, she said, but it's more multifaceted. It's about the process of healing.
Recently on the Team Mathias blog, Mandy connected the loss of her son to the difficult moments everyone faces at some point in their lives: "This world has a way of bringing us to our knees, and it is on our knees that we remember to look up."
Losing Mathias to epilepsy has driven her to a calling, she writes: "My passion is NOT about asking for money - it's about changing the world. ... (Epilepsy) is hidden in the shadows and surrounded in fear. A cure for epilepsy would be wonderful, but before a cure can happen I strongly believe that education will be the first step in changing epilepsy."
Participating in challenges like the Ragnar with Team Mathias encourages conversations about epilepsy.
Wendy Gilbertson, Koch's 30-year-old sister in Lena, Ill., and one of the participants in the Ragnar, remembers meeting a woman her age with epilepsy who only recently attained her driver's license because she hadn't been able to properly control her seizures with medication until then.
Besides the opportunities for social interactions, the race was cathartic on a personal level. The heat that weekend was suffocating, and the only relief came in the middle of the night as the team was running through the Racine area.
Running helps heal because it "frees your mind," Gilbertson said. "It challenges you physically, mentally, emotionally."
Team members joined Koch one by one as she ran the last eight miles of the Ragnar and they linked arms as they jogged into Lincoln Park. At the finish line, she remembers, "I grabbed whoever was there and started crying."
The Team Mathias challenges are "a different way of going about raising money," said Adam Rossing, a 30-year-old Argyle resident who has known Koch since high school and also ran in the Ragnar race this year. The team approach "was fun from the beginning. It was good to be a part of it. I definitely plan on doing more."
Koch plans to organize a team in a triathlon next year, and do skydiving the year after. But she envisions Team Mathias blossoming into something bigger and encouraging challenges to be as inclusive as possible.
Anyone can do a challenge in the name of Mathias, she said, whether it be running dozens of miles or walking one.
"Something beautiful can come out of tragedy," she said. "Something beautiful has to come."
The 34-year-old Argyle mom had always been a runner, but now she needed it, desperately.
"It was the only thing that kept me sane," she said. Going on runs distracted her from the wretchedness of watching helplessly as Mathias suffered. Medication had no effect. He was only seven months old when he succumbed to the disease.
"There was nothing I could do," Koch said. "It's a place a parent should never be."
His legacy lives on in Team Mathias, an effort Koch and her husband, Dan, started to remember Mathias and bring awareness to epilepsy. Team Mathias is a growing group of the Koch's friends and family - or anybody inspired to join in - and participates in challenges in his memory.
Two weekends ago, a 12-member team completed the Ragnar Relay, a 200-mile overnight run from Madison to Chicago. The intense relay race started Friday morning, June 8, and reached Lincoln Park along Lake Michigan in Chicago at about 6 p.m. the following day.
Donations on the team's behalf to the Epilepsy Foundation of Southern Wisconsin are being accepted through June 30 at Woodford State Bank locations. They're looking to match the $3,000 they raised last October at the Whistlestop Marathon in Ashland.
Team Mathias traded spots between two vans and the trail for almost 34 hours for Ragnar, each member taking turns driving, running or trying to slip in a quick nap.
Koch ran the final eight miles and remembers thinking to herself, "I can put one foot in front of the other because I have the choice to do that."
Mathias didn't have a choice. She thinks of this often when she's working on a Team Mathias challenge: "If he could go through what he had to go through, I can accomplish anything."
Mathias, the Koch's third son, had his first seizure at five months while the family was on vacation up north. It came as a complete surprise. He'd been a happy baby.
"Mathias was well known for melting hearts," Koch writes on the Team Mathias blog, teammathias.com. "... Mathias had many favorites: he loved to be read to and snuggled with, and listen to music. His favorite song was 'You Are My Sunshine.'"
Within two months of his first seizure, he died. There's no cure for the rare seizure disorder he had. It wasn't even discovered until 1995, Koch said, and only 100 cases of it have been documented worldwide since then.
"Cure" is a word conspicuously absent from the purple Team Mathias T-shirt Koch wears. Instead of the typical "Racing for a Cure" slogan, the family chose "Racing for an Answer."
A cure is part of that, she said, but it's more multifaceted. It's about the process of healing.
Recently on the Team Mathias blog, Mandy connected the loss of her son to the difficult moments everyone faces at some point in their lives: "This world has a way of bringing us to our knees, and it is on our knees that we remember to look up."
Losing Mathias to epilepsy has driven her to a calling, she writes: "My passion is NOT about asking for money - it's about changing the world. ... (Epilepsy) is hidden in the shadows and surrounded in fear. A cure for epilepsy would be wonderful, but before a cure can happen I strongly believe that education will be the first step in changing epilepsy."
Participating in challenges like the Ragnar with Team Mathias encourages conversations about epilepsy.
Wendy Gilbertson, Koch's 30-year-old sister in Lena, Ill., and one of the participants in the Ragnar, remembers meeting a woman her age with epilepsy who only recently attained her driver's license because she hadn't been able to properly control her seizures with medication until then.
Besides the opportunities for social interactions, the race was cathartic on a personal level. The heat that weekend was suffocating, and the only relief came in the middle of the night as the team was running through the Racine area.
Running helps heal because it "frees your mind," Gilbertson said. "It challenges you physically, mentally, emotionally."
Team members joined Koch one by one as she ran the last eight miles of the Ragnar and they linked arms as they jogged into Lincoln Park. At the finish line, she remembers, "I grabbed whoever was there and started crying."
The Team Mathias challenges are "a different way of going about raising money," said Adam Rossing, a 30-year-old Argyle resident who has known Koch since high school and also ran in the Ragnar race this year. The team approach "was fun from the beginning. It was good to be a part of it. I definitely plan on doing more."
Koch plans to organize a team in a triathlon next year, and do skydiving the year after. But she envisions Team Mathias blossoming into something bigger and encouraging challenges to be as inclusive as possible.
Anyone can do a challenge in the name of Mathias, she said, whether it be running dozens of miles or walking one.
"Something beautiful can come out of tragedy," she said. "Something beautiful has to come."