Rhinelander family champions ‘Purple Day’

March 26 celebrated to create epilepsy awareness, community

By Eileen Persike

Editor

RHINELANDER – Purple Day, celebrated March 26, started in 2008 in Canada by a young girl who struggled with epilepsy. Cassidy Megan wanted to create awareness of the neurological condition and let others with epilepsy know they weren’t alone.

For the last 10 years the Wakely family in Rhinelander has been part of that effort, creating purple ribbons and leaving information packets at some businesses and places like the public library. Epilepsy is the fourth-most common neurological disorder in the world. It causes unprovoked recurring seizures, which are defined as sudden surges of abnormal and excessive electrical activity in the brain. There are different types of seizures and different types of epilepsy syndromes.

“There are donation cans around town, but that’s secondary. Our key is the awareness,” said Lynne Wakely. “For us, that’s number one – for people to take a ribbon, look it up if you want, wear it on March 26 and help us spread awareness.”

Like Purple Day founder Megan, this cause is personal for Lynne and Bryan Wakely. Their 28-year-old son Eli has lived with epilepsy almost his entire life. While many people who live with epilepsy can take medication to control seizures and can do everything anyone else can, Eli has Lennox-Gastaut Syndrome, one of the most rare and severe forms of epilepsy. Eli experiences multiple types of seizures, around the clock and they don’t respond well to usual seizure medications.

When they are out distributing information, the Wakelys often hear stories from people who may not otherwise talk about epilepsy and its affect on their families.

“It’s kind of refreshing to hear that maybe they wouldn’t have talked about it otherwise,” Lynne said. “We’ve always been very open about it – Eli has had it for so long. Not for the attention, not for the ‘feel sorry for us,’ but so if he has a seizure at school or in the store, people know what to do, how to help, how not to help. It’s a scary thing.”

Eli was diagnosed with epilepsy when he was two-and-a-half years old, after his second seizure, which lasted 10 minutes.

“Anybody who has seen a seizure, it’s like a lifetime. One minute can feel like an hour – ten minutes was just forever,” Lynne said, adding they took him to the hospital and Eli was put on medication which they’ve been adjusting as they go along. “We’ve seen them over and over and over and each one is just heart wrenching. The other night we were talking and he was joking about something and then bam, down on the bed he went – just slams down. It takes his whole body and just slams it down.”

After the initial diagnosis, Eli was on medication for three years that kept him seizure free for two of those years. His neurologist thought he had outgrown the seizures, so EIi was slowly weaned from the medication and was free of seizures until one summer day in 2002 when he was getting in the pool for swimming lessons and the seizures came back with a vengeance.

After a particularly bad bout of seizures in 202, Lynne and Bryan took Eli to Marshfield Clinic where a doctor suggested they place their son on a ketogenic diet which can be helpful in controlling seizures. In the process of learning more about the diet, the doctor performed an ultrasound on Eli’s kidneys that Lynne said ultimately saved his life.  The ultrasound detected an enlarged kidney that was found to be cancerous. The kidney was removed. After 18 months of chemotherapy the Wakelys put Eli on the keto diet – high protein, low carbohydrates  – and he’s been on it ever since.

“We just stayed on it because his seizures are so bad and we were afraid to try and the neurologist felt it was doing some good,” Lynne said. “So here we are, 20 years later on that diet.”

A tag-team effort

The specialized diet is only a part of Eli’s care, which has become a tag-team effort between Lynne and Bryan. His daily routine is important and includes multiple medications, four keto meals a day, naps and playtime.

“He likes to play with cars and trucks – he has like an eight or nine-year-old mentality, so he’s still kid-like and we just go in there and make stuff up to make him laugh,” Lynne said. “It’s something he looks forward to and he just loves it. Just to pretend, and he can make stuff up as we go along and it helps his brain work.”

Another important part of his day is getting exercise. Eli has a specialized bike that allows the family to bike together, giving Eli his own space and sense of independence while keeping him mobile.

Do the Wakelys get any respite?

“We don’t,” Lynne replied with a laugh. “Our son will come by once in a while, but he’s on 12-hour shifts and he has a family; but we have him signed up to come over and play with him a little bit so we can just do something outside, or run to the store. But it’s hard. We don’t trust anyone to come in, and I don’t know that there are many people available.

 “We’ve done it for so long, and with the seizures you never know when they’re going to come or how long they’re going to last. So we tag team. We make it work somehow. It’s part of our life; it’s what we do.”

And for the past decade, educating the community about epilepsy is also something the Wakelys do. Lynne noted that Eli’s older sister and brother, like many siblings of people with special needs, are important to Eli’s care and were affected by their parents’ focus on their younger brother. She is working to instill that sense of concern in her grandchildren.

“I’ve got grandkids who I’m teaching so they know this is not something to be made fun of; it’s not funny to imitate a seizure,” Lynn said. “Yes, there are people out there who may not want to talk about it because the seizures are, well, so ugly sometimes and scary. They’ve witnessed a really bad one that Eli had one day and it kind of freaked them out. But now they want to guard him and defend him and protect him, so I think it’s good the grandkids started out at a young age.”

To show support for Purple Day

Pick up a packet containing a purple ribbon and information at the Star Journal office on Rives Street, the Rhinelander District Library and some other businesses. To contact the Wakelys, email wakellyn@gmail .com.

How to help

T urn person on their side

R emove harmful object

U se something soft under the head

S tay calm

T ime the seizure

NEVER put anything in a person’s mouth during a seizure and NEVER hold the person down.

When to call 911

•  If the seizure lasts longer than five minutes or the person has two or more seizures in a row

• If it is the person’s first seizure