Groups work to help families dealing with epilepsy
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Dawn Iversen can’t leave her 3-year-old son’s side.
Luke, pictured here in the hospital, was diagnosed with epilepsy about three months ago and suffers from various seizures up to 30 times a day.
“It’s gotten to the point where he can’t be alone for a second,” said Iversen as she spoke from her son’s hospital room, where he’ll likely be for the next week or so as he undergoes testing.
“He can’t even walk up the stairs by himself,” she said. “We never know when it’s going to happen.”
One moment, Iversen said, she had a healthy, happy boy. The next, she watched him suffer his first grand mal seizure, a nightmare for any parent. That was April 16.
Ever since, she said through tears, the lives of her and her family have not been the same. Iversen of Woodstock also has three other boys, ages 4, 17 and 20.
“Unfortunately, this has hit our family very hard,” she said.
In and out of the hospital and strained by medical bills, Iversen is getting help from members of the McHenry County-based Mom 2 Mom group (www.mom2momclub.com) she joined when Luke was only about a week old.
Members bring the family dinners, provide babysitting and are planning a fundraiser in the family’s honor, though Iversen said she would like all the proceeds donated to the Epilepsy Foundation.
On Aug. 24, 15 percent of food purchases accompanied by a Mom 2 Mom certificate at Buffalo Wild Wings, 461 S. Randall Road, Algonquin, will go toward the cause. E-mail info@mom2momclub.com for a certificate.
“We’re just trying to find any kind of a way to help them out,” group President Cathie Hemesath said.
It’s another example of the wonderful support that groups of this nature provide moms.
“I think it’s just amazing,” Iversen said. “They have been so good to us.”
Iversen also has relied on the Epilepsy Foundation of North Central Illinois, Iowa and Nebraska (www.efncil.org), which has a McHenry County office, reachable at (847) 791-4797.
Like most parents in her situation, Iversen knew nothing about epilepsy until her son’s sickness.
The grand mal seizure he first experienced caused his whole body to shake. He couldn’t understand or hear his mother. It was the scariest thing she’s ever experienced.
Recent seizures cause Luke to suddenly fall face-first onto the floor, concrete, off a swingset, wherever.
“That’s why we’re here (at the hospital),” she said. “We don’t know why these are happening.”
Nancy Monica experienced the same feeling of helplessness when her daughter Megan, now 15, was diagnosed with epilepsy as a baby. She went on to found the McHenry County office of the Epilepsy Foundation, offering support groups, advocacy, employment assistance and education for families. The non-profit group does not charge anything for its services.
Megan suffered from life-threatening seizures that could last up to 45 minutes. Doctors first told the family she would never sit up on her own, that she would have no future.
Megan will start high school in the fall, texts her friends on Facebook, rides her bike and “looks like the most normal child in the world,” Monica said. Because of the wide range of at least 20 different seizures suffered by those with epilepsy, it can be difficult to treat. At least 77 percent of the time, a cause is not known, Monica said.
It’s hard to see past that, Monica said, but she said her daughter is “the greatest thing that could ever happen.”
“It’s not always a horrible thing, it’s just that you don’t ever expect you’re going to have a child with special needs,” she said. “That’s the thing about epilepsy, nobody can predict what the outcome is going to be.”
Simply by telling their stories, Monica and Iversen, even at this early stage, hope to raise awareness of the complexities of epilepsy and the services available.
At the very least, they’re putting life and the everyday stresses we endure in perspective, aren’t they?
