ST. MARYS — On May 18, a New Bremen family will be one step closer to their goal of making life easier for their 1-year-old son, Oliver.
Oliver Dietzman was diagnosed with Dravet Syndrome, a rare form of epilepsy, in September. His first seizure, which happened in June, lasted an hour and 15 minutes, Allison Dietzman said.
“My brother has seizures so I’d seen them before (and) knew what to do,” she said. “(But Oliver’s) seizures are becoming harder and harder to control.”
Since then, his parents, Allison and Josh Dietzman, have been overwhelmed with hospital visits and countless medications — none of which work effectively, as Dravet does not respond well to anti-epilepsy medicine. The Dietzmans have been taking half-night shifts of sleeping next to Oliver in his bed to be there in case of another seizure.
Two of Josh Dietzman’s colleagues at Crown Equipment in New Bremen, Katie Eyink and Amy Stephens, befriended the family and took it upon themselves to organize the Flame Walk For Epilepsy, a 5K Walk/Run to raise money for the family. Specifically, the money will go toward the purchase of a seizure dog for Oliver. Much like a seeing-eye dog assists the visually impaired, the seizure dog would be with Oliver at all times - sleep with him, watch his movements and be able to sense when he might be about to have a seizure.
The Flame Walk costs $20 for individuals to sign up and $25 for those who wish to be timed. This price includes a T-shirt. There is also an option to sign up with other people as a fundraising team and work to get businesses to sponsor the team’s walk/run, but this is not required to participate.
“We have at least eight fundraising teams registered so far,” Eyink said. “You can go on the website and start a team. We’re doing outside work to have people sponsor us. All of that goes in an account towards the seizure dog.”
The fundraising goal is lofty.
“We need to raise $50,000 for the seizure dog — that’s our top priority,” Stephens said. “After that the money will go toward research for Dravet Syndrome.”
The walk will start at 4:30 p.m. May 18, in front of the New Bremen Bicycle Museum and will end at Crown Pavilion.
Registration is open up until the day of the race, and last-minute participants can even register the day of without paying a higher price. To pre-register, visit FlameWalk.org. Registration the day of the race and packet pick-up will start at 3 p.m. at the New Bremen Bicycle Museum.
“(A seizure dog) would mean so much freedom, not just for us, but for him down the road,” Allison Dietzman said. “It would sleep with him and be with him all night and even go get his medication.”
The Flame Walk means more to the Dietzmans than the money they would raise, though.
“I (also) want to celebrate people with epilepsy because there’s such a stigma behind it,” Allison Dietzman said. “And people are so scared of it. I just want people to know there’s a face behind it. We just need to come together and help not just Oliver but (all people living with epilepsy.)”
Eyink and Stephens share the family’s passion in working to support people with epilepsy, but they have developed a special connection with the Dietzmans.
“We’re their Ohio family,” Stephens said, as the Dietzmans moved to New Bremen from Texas and do not have relatives in the area.
Eyink expressed a desire to help her friends.
“To me it was so admirable how Josh and Allison faced everything,” Eyink said. “I knew there was plenty of help to be given in this community and Oliver deserves all the help he can get.”
The two are organizing a fundraiser for the last two weekends in April, in conjunction with the New Bremen and Minster garage sales that will take place on April 19 and 20 and April 26 and 27, respectively.
They will be manning a stand stocked with donated baked goods, epilepsy T-shirts and wristbands, from which proceeds will go toward the 5K.
Their stand, all decked out in purple, will be located on Ohio 66, both in New Bremen and in Minster.
For more information, contact Eyink at 419-629-2311, or Stephens at 937-638-9217 or search Team Oliver 2013 on Facebook.