The Wakelys encourage community members to pick up a ribbon and wear purple on March 26 to promote epilepsy awareness. Pictured, from left to right, are siblings Kara and Isaac, parents Lynne and Bryan, and Eli in front. Submitted photos.
The Wakelys have provided area businesses with bookmarks and ribbons to promote epilepsy awareness in advance of Purple Day on March 26.
3/24/2020 7:29:00 AM 'Purple Day' March 26 promotes
international epilepsy awareness Local family shares their son's story of living with epilepsy
Stephanie Kuski River News Feature Writer
A local family is calling upon community members to wear purple and promote epilepsy awareness in support of Purple Day on March 26.
Every year, Lynne and Bryan Wakely equip area businesses with ribbons and bookmarks with the goal of spreading the word about epilepsy awareness.
Their son Eli was diagnosed with Lennox-Gastaut syndrome, a severe condition that impairs mental abilities and affects individuals with multiple types of seizures, at the age of 2.
Purple Day began as an International Epilepsy Awareness Day galvanized by Cassidy Megan in 2008.
Megan was motivated by her own struggles with epilepsy. Her goal was to start a dialogue about epilepsy in an effort to dispel myths and help those battling this condition to feel less alone.
The New York-based Anita Kaufmann Foundation and the Epilepsy Association of Nova Scotia joined forces in 2009 to launch Purple Day internationally. Those organizations partner with individuals and organizations around the world to promote epilepsy awareness, and their combined efforts have involved various organizations, schools, businesses, politicians and celebrities around the world.
Purple Day gained international attention when Eli Wakely, now 24, was in high school, his mother Lynne said, so their family started making ribbons to promote awareness and continue to do a little more every year. They leave ribbons, bookmarks and a jar for donations to be sent to the Epilepsy Foundation at area businesses in the hopes others will reach out for support and information about epilepsy.
"It's been really rewarding to touch people in some way by doing this," Wakely said.
She said having someone who understands and can relate is a huge support in a time of need, so she and her family promote Purple Day every year in the hopes of supporting others in the community who are also facing this disease.
"In doing Purple Day, we're hoping to spread more awareness about epilepsy and just talk to people. We put out donation cans, but we would rather people took a ribbon and wore purple in support of epilepsy awareness," Wakely said. "It's just something we started as a family because it was so important for us to help others in some way so they know that they're not alone."
In promoting Purple Day, the family also shares their own journey. Wakely said her son Eli's story has been a long haul, but one that has been rewarding to her as a parent.
Eli's syndrome is characterized by recurrent seizures which cause him to stiffen uncontrollably, his mother explained. She and her husband care for their son full time to ensure his safety, since a seizure could strike at any moment.
"His seizures are bad, he has them every single night and sometimes during the day," Wakely explained. "Sometimes even when we don't realize he's having a seizure, he still has seizure activity going on.
"When he first started having the seizures, of course we didn't know what was going on, so it was very scary."
After Eli was diagnosed at age 2, his mother said he was on medication for three years, two of which he was seizure-free. By the time he was 5, the doctors thought he might have grown out of the seizures, so they slowly weaned him off the anti-seizure medications.
Wakely said her son was doing OK for some time, but then about a year later he was at a swim lesson about to jump into the pool when he experienced a full myoclonic seizure by the side of the pool.
At that point, Eli went back on anti-seizure medication, but soon he had to be flown to Marshfield because his seizures were getting worse and becoming uncontrollable.
In September of 2002, Eli's seizures were starting to get under control when a neurologist asked the Wakelys if they would be interested in trying a ketogenic diet, which had worked for some individuals living with epilepsy for whom medication did not help. The family didn't know much about the diet, so they were leery and asked for some time to research the treatment first.
While they were in the hospital, Lynn Wakely said their doctor recommended an ultrasound of Eli's kidneys because the keto diet can cause kidney stones. To ensure his kidneys were in good condition prior to starting the new diet, they did an ultrasound.
But the results indicated Eli's left kidney was enlarged. Although the family was assured it wasn't of major concern, they returned for a second ultrasound to make sure the kidney was OK.
Those scans revealed Wilms tumor on Eli's right kidney. It was cancerous, but they were lucky to have caught it in the early stages.
"We hadn't even gone on the ketogenic diet at that point," Wakely explained. "This had nothing to do with the seizures, but had we not gone down to Marshfield to address the seizures, we probably wouldn't have found that tumor until it was in the later stages, which wouldn't have been good."
Eli had his kidney removed in October 2002, followed by 18 weeks of chemotherapy and five more years of repeating ultrasounds and blood panels to ensure the cancer didn't return. He couldn't try the keto diet at that point, because it would have interfered with the chemotherapy.
But even when Eli finished chemo in April of 2003, his seizures were still worsening. By November of the same year, his ability to communicate was deteriorating.
"It was heartbreaking that he couldn't even say 'I love you' to us because he could not communicate," Wakely said.
At that point, the Wakelys decided to try the ketogenic diet, which seemed to help - Eli could communicate better, but he was still having frequent seizures even though he was taking three anti-seizure medications in addition to the special keto diet.
But more recently, Eli started a new medication which has shown ample promise.
Epidiolex is a new anti-seizure medication that uses CBD oil. The oral medication recently received FDA approval for two rare and severe forms of epilepsy. Eli has been using CBD for about a year in addition to his other anti-seizure medications and ketogenic diet.
"The CBD is the first seizure medicine that we've actually noticed some changes in his activity and communication, " his mother said. "The others he's been on for quite some time and we still haven't seen as much progress as we did the CBD. He's been on so many anti-seizure medications, and this is the first one we actually saw a difference in him, in his personality and everything."
His mother said Eli is functioning better and is experiencing fewer seizures, although he still encounters them every day.
Although hopeful for the future, the family still works each day to support their son.
"He still has seizures every night," Wakely said. "Someone is with him all the time. My husband and I tag team and a lot of the time it's both of us here with him. If we go on walks or bike rides, we both have to be alongside him because we never know when those seizures are going to happen."
Although Wakely and her husband Bryan have a full-time job as caretakers of their son, she said it's fulfilling to watch him grow and persevere despite the initial challenges.
"As hard as it is for us, he's a joy," Wakely said. "He's just one wonderful kid. He's gone along with anything that has to be done, and he's made it easier for us just by being the kind of person he is."
Wakely said Purple Day offers an opportunity for her family to share their story and connect with others who are facing similar challenges.
"We've always been open about Eli's condition," she said. "We want people to be aware of what's going on. We didn't want to hide it because if something happens, we want people to know what to do and be aware of how to help."
In support of Purple Day, the Wakelys have provided ribbons and bookmarks with information about epilepsy in addition to their contact information in the hopes of spreading awareness.
The ribbons are now available at Ripco Credit Union, Wagner's, A'la Mode, Family Video, Trig's and the Northwoods River News.
In addition, collected donations will go to the Epilepsy Foundation to support individuals living with epilepsy.
"Take a ribbon and look up epilepsy, maybe learn a little something about it," Wakely said. "It's OK to help somebody who might be a little different than you, or has something going on that you might not understand. You don't have to run away or be afraid - you can help by being a friend to that person."
In addition to wearing purple for Purple Day, the Wakelys also encourage those interested in reaching out to contact them via email at email@example.com.
Stephanie Kuski may be reached at stephanie@rivernews online.com.
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