Jared Kimball found a good job, moved into his own apartment, finished his accounting degree and paid off his first nice car.
Then, overnight, he was gone. The 29-year-old from Madison died in his sleep in April from epilepsy, apparently after a seizure.
His parents, struggling to endure their first holiday season without him, are turning to Lily’s Fund for support and purpose.
The fund, set to hold its 10th and final Lily’s Luau next month, raises money for epilepsy research at UW-Madison.
The fund has awarded a grant that aims to prevent deaths like Kimball’s. The money pays for research on the sometimes dangerous connection between epilepsy and sleep.
“People don’t realize how deadly this disease can be for some people,” said Bruce Kimball, Jared’s father.
Jared Kimball was diagnosed with epilepsy at age 12, but many of his friends and co-workers didn’t know he had the condition, said his mother, Cathy Kimball.
“He never complained about epilepsy,” she said. “He didn’t want people to feel sorry for him.”
Epilepsy, a brain disorder marked by seizures that can range from mild to violent, affects one in 26 people at some point in their lives, according to the Centers for Disease Control and Prevention.
The condition can be caused by injury, illness or abnormal brain development. In many cases, the cause is unknown.
David and Anne Morgan Giroux, whose daughter Lily, 22, has epilepsy, started Lily’s Fund in 2007 to help UW-Madison expand research on the disease.
Events, including Lily’s Luaus held each January since 2009, have raised more than $1.2 million. About $450,000 has been given out in grants and fellowships. Another $100,000 grant will be awarded at the next Lily’s Luau, scheduled for Jan. 20 at UW-Madison’s Union South.
With about $800,000 remaining, the Girouxs are hoping to raise $200,000 at the final Lily’s Luau. That would give the fund $1 million, enough to hand out 10 more $100,000 grants.
Though Lily’s Luau is ending, Lily’s Fund is not, as smaller events will continue.
“We’re hoping people will take the idea of the luau and keep the hula going in other ways,” Morgan Girioux said. “Epilepsy is still not at that breast cancer level, where the rallying cry has gone out. It’s still being tucked away, and there’s still a stigma.”
Studying epilepsy and sleep
Jared Kimball died April 7 from sudden unexpected death in epilepsy, or SUDEP. Such deaths are thought to be caused by seizures or by breathing or heart problems related to seizures, said Dr. Rama Maganti, an epilepsy researcher and clinician at UW Health.
“Seizures disrupt sleep, and disrupted sleep makes seizures worse,” said Maganti, who received $100,000 from Lily’s Fund to study epilepsy and sleep. “It can be sort of a vicious cycle.”
In a study by Maganti and other UW-Madison researchers of people with epilepsy, those whose brains had more seizure activity had more abnormal sleep.
In a study of epileptic mice, Maganti and collaborators at Creighton University in Omaha, Nebraska, found an inability to sleep regularly in the final 15 days of their lives was associated with three-fourths of their deaths.
Maganti is seeking federal funding to compare two kinds of sleeping pills in epileptic mice, with the hope that one or both of the pills might reduce sleep disturbances in people with epilepsy.
“Perhaps there’s a time window when we can act and prevent SUDEP,” he said.
Jared Kimball didn’t complain of problems sleeping before his death, but he apparently wasn’t taking his epilepsy medication regularly, said his parents, who live in McFarland.
His prescription wasn’t refilled as scheduled the month before he died, and an autopsy found none of the drug in his body.
Other epilepsy drugs he had taken caused him to lose weight or become sleepy. But the one he was on the past several years — oxcarbazepine — hadn’t caused side effects, his parents said.
But the drug label said to limit alcohol intake, and he occasionally drank heavily, they said.
When Jared Kimball was a child, before his diagnosis, his parents thought he simply wasn’t paying attention at times.
“We’d be talking to him, and all of the sudden his eyes would just wander off, like he was following a fly up into the corner of the room,” Bruce Kimball recalled.
They later learned the episodes were seizures. In seventh grade, he had what’s called a grand mal seizure, with convulsions and loss of consciousness. Then his epilepsy seemed to subside, and he went off medication, before he had major seizures again, during sleep, at age 19 and 21.
After graduating from McFarland High School in 2005, Jared Kimball earned associate degrees in culinary arts and accounting from Madison Area Techinical College.
He got an accounting job at J.H. Findorff and Son, a Madison builder, and a four-year accounting degree from Lakeland College.
In February of this year, he wrote to Morgan Giroux, asking how he could help with Lily’s Fund. The next month, he organized a fundraiser at Findorff and encouraged co-workers to wear purple, which represents epilepsy.
Now his parents are planning to go to their first Lily’s Luau, on their son’s behalf.
“He had such a great life ahead of him,” Bruce Kimball said. “One day he was here, and the next day he’s not.”
When Jared was a child, his parents thought he simply wasn’t paying attention at times. “We’d be talking to him, and all of the sudden his eyes would just wander off, like he was following a fly up into the corner of the room.” Bruce Kimball, Jared’s father