Luke’s Leaders will host mouse races Feb. 25 to raise money and awareness for child stroke victims, with proceeds benefiting the Children’s Hemiplegia and Stroke Association.
The event is especially important to Jamie Slaten. Her son, Luke, suffered a prenatal stroke and was subsequently diagnosed with encephalopathy with status epilepticus during sleep.
“He was seven months old when we found out he had the stroke,” Slaten says.
“It’s rare, but not as rare as people think: a stroke occurs in one of every 2,800 live births and the highest risk of a stroke is within the first year of life,” she says.
To put the statistics into perspective, Slaten says the condition would affect 25 children in the Riverbend.
Slaten first noticed Luke wasn’t using his right hand as an infant. His pediatrician referred him to a neurologist for tests. Following a magnetic resonance imaging test in March 2011, Luke began therapy.
“We noticed he would drag his right leg while crawling, and therapy helped him correct his crawling and eventually start walking,” she says.
At 18 months, Luke suffered his first seizure. When his father, Caleb, found him, he and Slaten didn’t know what to make of the situation.
“It happened while he was sleeping and wasn’t anything like what I think of when I hear the word ‘seizure’; he was unresponsive and we didn’t know what was going on,” Slaten says.
Following his first electroencephalogram, Luke started medication with little success.
“He had a few bad seizures by the age of 4,” says Slaten. “We kept increasing the medicine, but it wasn’t working.”
After switching to Children’s Hospital, for which Slaten has nothing but kind words, Luke underwent a videotaped overnight electroencephalogram.
“Things had gotten better for awhile, but then he started going backward in preschool,” Slaten says.
A second electroencephalogram determined he had the rare condition.
Luke’s nighttime seizures persisted and — following another electroencephalogram — more aggressive medication appeared to be the best route of treatment.
“One would make him too tired and another made it to where he barely talked,” Slaten says. “The doctors at Children’s are very much about treating the patient over the problem, and knew that even if the medicine worked for the seizures, it wasn’t working for him.”
At the age of 5, Luke become eligible for a hemispherotomy: disconnecting the brain’s left half. Slaten says she wasn’t as afraid of the surgery as much as Luke’s condition itself: “In my heart, I knew that it just had to work,” she says.
With a support group of family and friends outside the operating room, Luke underwent the five-hour surgery on Aug. 12, 2015. Slaten says the change was obvious within the first few days.
“They told us he might not say a lot for the first couple of days after the surgery, so we weren’t expecting him to talk,” she says. “After he woke up, he said ‘I want to go to Walmart’ and ‘I want popcorn’ perfectly clearly.”
Within two to three days, Luke was out of bed and walking. He showed such improvement the family was allowed to leave the hospital after only five days instead of the standard seven. Released by neurosurgeon Matthew Smyth, Luke was able to go back to school in early September and Slaten describes the difference as “huge.”
“He was bridging the gap and catching up to his classmates,” she says.
One unfortunate side effect from the surgery, which Slaten was warned about, is Luke’s right-side vision loss.
“It is unfortunate, but I’m just glad he’s able to learn and develop,” she says.
Slaten says her biggest ambition for Luke is for him to be as independent as possible. He undergoes speech and physical therapy at Bethalto East Primary School and occupational therapy twice per week at Alton Memorial’s Human Motion Institute.
“His biggest deficit is his right hand, which the occupational therapy addresses,” she says. “He’s doing really well, but we still have a road ahead of us.”
Despite the medical scares and hardships Luke has confronted in his six years, he’s an optimistic and fun-loving kid who participates in sports such as soccer and t-ball and always gives his all.
“Some parents want to hide their children’s medical conditions, but I’m the exact opposite,” Slaten says. “I want as much awareness and understanding as possible.”
Doors open at 6:30 p.m. for the event starting at 7 p.m. at the Wood River VFW, 231 E. Edwardsville Road. Popcorn and beverages will be available, and attendees are allowed to bring in outside food (but not drinks). Admission is $20 per person and $120 for a table of 8.
The first 20 minutes will consist of Slaten describing Luke’s journey with pictures and video footage. Tammy Kruse of Fairmont Mouse Races in Moro will provide the mice.
“Mouse races appealed to me for a couple of reasons,” Slaten says. “It allows me to be freed up to talk to people during the event, and I’ve never been to one myself. People always tell me about how fun they are.”
Kruse and 12 volunteers will orchestrate the event, which will include roulette and a 50/50 silent auction for raffle baskets, including items like tanning packages, hair packages and Blues tickets.
For Luke’s Leaders’ first official event, Slaten wants to donate the proceeds to Children’s Hemiplegia and Stroke Association in recognition of the organization’s work on behalf of child stroke victims.
“They’ve provided grants to help families pay for orthotics as well as $16,800 in scholarships for children with strokes in 2016,” she says.
Slaten says she hopes the mouse races will lead to an annual tradition in the community and that she can one day assist a family in need by helping cover therapy and medical costs.
“We have to replace Luke’s leg braces every year, which costs about $200,” she says.
She’d also like Luke’s Leaders to be in a position to provide scholarships and orthotic grants, in the hopes of making anyone’s difficult journey a triumphant day at the races.