Katie runs for a reason

Katie Lewis (front row centre) rallied the support of friends and family to form the first Team Epilepsy Ontario for her first marathon in 2011.

The early morning sun is shining brightly, and the air is crisp as 18-year-old Katie Lewis makes her way down one of many running trails in Thunder Bay, Ont. As she passes, it would be easy to think running comes easily for Katie. The truth is it is neither easy nor natural to her because of the severe epilepsy she has known for most of her life.

Katie had her first seizure when she was 16 months old; others followed on a daily basis not long after. It was at this young age that Katie was diagnosed with epilepsy. Katie’s father, Trevor, is also epileptic, so Katie had the benefit of parents who were already very familiar with living life with epilepsy. Despite this benefit, Katie still had a very difficult life waiting for her.

As she grew older, Katie’s seizures became more frequent. Despite various combinations and doses of many different medications, she had very limited success controlling her seizures. Katie even tried the ketogenic diet between the ages of eight and 12, but not even this eliminated seizures from her life.

Growing up

Katie’s seizures were so frequent that she couldn’t ride a bike. She couldn’t participate in sports. She couldn’t even run more than 15 to 20 feet without falling down from the dizziness that she experienced at all times. Life was very restrictive for Katie.

Fast forward to when Katie was 16. At 4 p.m. on Sept. 18, 2008, Katie experienced her first status epilepticus (a prolonged seizure). Because of how long and intense the status was, her brain started to shut down some of its executive functions.  Katie’s breathing stopped. She had to use an artificial respirator to stay alive. The team of 11 doctors and nurses at Thunder Bay Regional Health Sciences Centre worked on Katie for four hours before her status epilepticus finally came to an end.

Praying for a miracle

By that time, Katie was in a coma. She was immediately moved to the Intensive Care Unit, where her parents were told the extent of damage done was still unknown. The doctors warned them that Katie might not live through the night.

Miraculously however, the prayers of Katie’s family and friends were answered. Not only did she survive the night, but the very next day she resumed breathing on her own and came out of her coma. Amazingly, just a few days later, Katie was able to go home. For a brief period of time, Katie experienced no seizures, but before long, the seizures came back – with a vengeance.

In 2009, one of Katie’s doctors referred her to the epilepsy unit at the Health Sciences Centre in London, Ont. In November of that year, she travelled more than 1,700 kilometres to receive medical care that is unavailable in northern Ontario.

While in the epilepsy unit, doctors discovered that Katie’s seizures originated in the right temporal lobe of her brain – the area responsible for memory and emotion. Katie soon became a surgical candidate. On Dec. 3, 2009, Katie had a right temporal lobectomy, which removed her entire right temporal lobe.

Since that day, Katie has experienced no more seizures or auras!

Katie has since been learning how to live life without seizures, and is now able to do many of the things that were only distant dreams prior to her surgery. She now has her G2 driver’s licence. She babysits for other families, and enjoys a new level of independence now that she no longer needs to be in the presence of another person all the times!

Marathon training

In September 2010, Katie watched her father train for a half marathon to raise money for a music festival in Thunder Bay. When he had completed his race, Katie asked her father if he would train her to run a half marathon the following year. She wanted to raise both epilepsy awareness and funds for Epilepsy Ontario.

Katie’s team of doctors in London and Thunder Bay gave her the green light. In January 2011 Katie began her nine-month training program. Because Thunder Bay’s winters commonly reach temperatures in the -40’s, Trevor and Katie asked Lakehead University if they could get a discounted price to train on the indoor track. Lakehead University was eager to help and gave both Trevor and Katie free access to the entire athletic department.

In early 2011, Trevor got in touch with Epilepsy Ontario to share Katie’s story and to ask permission to use Epilepsy Ontario’s name in their run. Team Epilepsy Ontario came to life in Thunder Bay with just two members – Katie and Trevor.

Run for Epilepsy is born

February 2011 saw the birth of the Facebook page, Run for Epilepsy, which helps spread epilepsy awareness and tells Katie’s story. Katie used this Facebook page to challenge others to join Team Epilepsy Ontario, and to run with her on Sept. 18, 2011 at the Thunder Bay Marathon – Miles with the Giant. It didn’t take very long before 25 people from Ontario and Manitoba accepted.

On Sept. 18, 2011 – three years to the day after Katie almost lost her life to epilepsy – Katie ran the half marathon. Her goal was to complete the half marathon of 21 kilometres in three hours.  Katie beat her goal by finishing in two hours, 46 minutes and 54 seconds! Trevor made live updates on the Run for Epilepsy page during the race via his Blackberry. As Katie crossed the finish line, his update read, “She’s done it! Take THAT epilepsy!!”

In the days that followed the half marathon, many people mailed or hand delivered cheques to Katie at her home to support the fundraising portion of her half marathon. In October 2011, Katie and the rest of Team Epilepsy Ontario were thrilled to send $7,597.80 to Epilepsy Ontario. At Katie’s request, Epilepsy Ontario then forwarded the money to the epilepsy unit at the London Health Sciences Centre that performed her life changing surgery.

Full speed ahead

Katie’s running days are not over. On Dec. 31, 2011, she and her father ran in the Running Room’s Resolution Run. The two attracted so much attention that the Running Room suggested they continue fundraising for Epilepsy Ontario in another run on Aug. 19, 2012.

What’s more, Trevor received an invitation from Thunder Bay to be a recipient charity for the Miles with the Giant marathon on Sept. 23, 2012. He plans to continue donating the money to Epilepsy Ontario.

Please show your support for Katie and Trevor by going to the Facebook page, Run for Epilepsy, and hitting the Like button. If you would like to help Epilepsy Ontario support others like the Lewis family, please click here, and make a donation today.

“Always dare to dream because some day those dreams may just come true!” – Katie Lewis

Writer: Trevor Lewis
June 13, 2012

For more events, click here.