Henry and Diane Woloson are on a mission. The Independence Township couple want to raise awareness of a disorder that took the life of their daughter, Katie Woloson.
A year after Katie died, the Woloson family had their first fundraiser for a scholarship travel abroad program at Michigan State University. The program helps raise awareness while also helping students ‘jet setting? around the world like Katie loved to do.
In Aug. 2013, Katie died at the age of 27 from the disorder Sudden Unexpected Death in Epilepsy– similar to sudden infant Death Syndrome.
Epilepsy affects the brain and nervous system. Electrical signals are overly active, causing disturbance and resulting in a sort of misfire of circuitry in the brain. When seizures occur, patients can be seriously injured.
In 2009, researchers found a gene that could cause many severe issues including increased susceptibility to epilepsy and sudden death.
SUDEP, considered rare and is not yet completely explained by the medical community, accounts for up to 17 percent of deaths in people with epilepsy, Henry said. Doctors believe SUDEP may be caused by an abnormalities in the heart and respiratory system.
Many people associate epilepsy with seizures, but Katie did not experience full blown seizures. Instead, she experienced a milder form involving ‘tremors.? Katie had been diagnosed with epilepsy from age 5, her father said.
When Katie died in her Maryland apartment, her family was shocked because neither they, nor Katie, were ever informed SUDEP could happen.
After Katie’s death, Henry researched SUDEP by talking with medical professionals and reviewing statistics and other information. He believes the medical community is reluctant to talk about SUDEP, but insists it is a responsibility to inform individuals and families of the danger, so preventative measures can be in place.
If medication is taken as prescribed, patients face a 1 in 1,000 chance of SUDEP. When medication is not taken properly, the chance of SUDEP rises dramatically to a 1 in 150 chance of sudden death.
Being aware of these dangers may mean patients and their families are more proactive with their condition.
In addition to being aware SUDEP dangers exist, and knowing the importance of taking medication as prescribed, researchers have found SUDEP can be reduced by Electrocardiography, screening for abnormalities in heart rhythm.
SUDEP is so rare, the funding allocated to research the disease is not as prevalent as other conditions.
Since they lost Katie, the Woloson’s have worked to make sure she is remembered.
Katie, a Clarkston High and MSU graduate, loved to travel. She has been around the world to countries Australia, Spain, Italy, England, Morocco, Ireland, France and Greece.
Students awarded the scholarship at MSU can travel to over 60 countries across the world. To be eligible for the scholarship, the candidates must demonstrate a financial need.
‘We want to be able to help students who may not otherwise be able to go,” said Henry. ‘We are happy we can provide a new experience for them.?
During the first year of the program, the scholarship fund made it possible to send four students abroad. The $4,000 scholarships are awarded to students entering Packaging Engineering, the same field Katie studied.
Henry hopes that number grows. In the long-term, the Woloson family plans to create an endowment, a pool of money that serves to finance a cause like traveling abroad.
Henry showed The Clarkston News letters of appreciation from students awarded the scholarship, thanking them.
During the fundraiser, over 80 people attended and helped raise $12,000.
‘We are very thankful for the support of friends,? said Henry. ‘We are grateful for their generosity, and the generosity of the community.?
Tears fill his eyes as he recalls Katie, a spirited young woman do full of life, Henry said he will continue contributing and working on the cause in memory of his daughter.
‘It is my obligation,? he said.
For more information on SUDEP go to www.makingsenseofsudep.org to learn more about epilepsy visit www.epilepsymichigan.org.