March 8, 2017 at 4:59 p.m.
Purple Day set for March 26
Wakelys continue to raise awareness for epilepsy
Purple Day set for March 26
By Kayla Thomason-
Lynne Wakely's son, Eli, is now 21 years old. Eli Wakely has five different types of seizures, drop seizures, absence (staring), tonic (stiffening of arms and legs), myoclonic (sudden head jolts), and tonic-clonic (whole body jolting, used to be called grand mal). He experiences seizures every day.
"We have always been so open about Eli's seizures because we felt that the more people know the better they could help him or someone else if need be," said Lynne Wakely.
The family raises awareness about epilepsy by sharing their son's story, and for the past several years around Purple Day they leave small buckets filled with ribbons.
"I am home most days with Eli and I care for my grandchildren so my husband is the one that goes out into the community delivering ribbons and talking to people about why he is wearing purple ribbons," Wakely said.
Her husband, Bryan, will wear several ribbons on his shirt in case someone asks for one, and his interactions with the public have been beneficial.
"He has come home with so many interesting stories about people opening up to him about someone they know or a child of theirs that has epilepsy but were not comfortable talking about it," she said. "It made us feel so good to hear these stories and let people know that it's OK to talk about it."
They drop purple ribbons off at the schools the week before Purple Day so staff can wear them on Friday, March 24, as Purple Day lands on Sunday this year.
Ribbons and a donation cans can also be found around town at A'la Mode Ice Cream and Coffee Shop, Holiday Gas Station, Trig's, Ripco Credit Union, Family Video, Wagner West Side Shell and Brown Street Books.
"Ribbons are free, but we will accept donations that will go directly to the Epilepsy Foundation," she said. "We do feel that participating in Purple Day has helped spread awareness."
Over the years Eli has tried many different types of medication - is currently on three - and is on a special diet called the ketogenic diet, which is protein-rich, low in carbohydrates and high in fat. There is something that should help with Eli's seizures, however they can't get it yet.
"This is an oil that is extracted from medical marijuana," she said. "It has been shown to drastically reduce seizures. This is our only hope right now but sadly there is no legal way to obtain it yet. So we will keep fighting for our son and for a cure and Purple Day is one way to get awareness out there not only for our family, but for anyone who has epilepsy."
That could change soon, as the Wisconsin state Assembly on Tuesday passed a similar bill legalizing the extract for the treatment of seizures (see sidebar).
Kayla Breese may be reached at [email protected].
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