Kiley (26) and her mother Kathleen (51) are fitness enthusiasts from the suburbs of Chicago, Illinois, USA. Kiley, the middle sister of three, lives with moderate autism, severe intractable (uncontrolled) epilepsy, and minor cerebral palsy. In December 2015, she appeared in Women’s Running magazine as their Cover Star Contest winner, making international news as the first individual with autism to be on the front page of a major fitness magazine. We connected with Kathleen, and asked about the duo’s regime of exercise with epilepsy, how Kiley found it being an international cover star, and their new project, ADAPT Sensory Studios.
First of all – Kiley, congratulations on being a cover star for Women’s Running, I hear she beat more than four thousand other entries! How did you get into running?
Kiley began running for Special Olympics when she was about eight years old. She ran shorter races until a major blood infection almost took her life after a surgery at eighteen. Once we began regaining her strength we began running longer distances (5KM) [to get sponsored and] pay it forward for all of the programs that helped her throughout her life, such as the Epilepsy Foundation of Chicago, Autism Speaks, Hope Children’s Hospital, Make-a-Wish, and the Rush Epilepsy Center. She then realised she wanted to run a half marathon, so we ran the Chicago Half Marathon, and another after that, and the rest is history.
Do you have a running routine?
We still run on a daily basis, at least two-and-a-half miles, as we are part of a group called Run the Year [a fitness challenge to run the same amount of miles as the year number]. Kiley and I finished our first successful year this past year, running 2017 miles.
"Once we began regaining her strength, we began running longer distances to get sponsored and pay it forward "
What sports and activities do you do?
Besides running, we both enjoy cross-fit training, biking, hiking, kayaking, paddle boarding, snowshoeing in winter, horseback riding, martial arts… Our happiest places are the gym, and anywhere outdoors, running, hiking, etc. Kiley’s very happy place is on the back of a horse, (where she has had a seizure).
Does Kiley have seizures during exercise often?
She has had many seizures during her physical activities, especially her running. She ran and finished the Chicago half marathons amidst two grand mal [tonic-clonic] seizures.
Can you tell us a bit about Kiley’s epilepsy?
Kiley lives with severe seizures in the right temporal lobe. Her first grand mal [sic] seizure was at the age of one. She spent the first seven years of her life in the ER pretty much every day. She was diagnosed with intractable epilepsy when she was seven. Her seizures became so severe that she was seizing at the highest spike an individual can seize at every second of the day. She has lived most of her life within this spectrum. Kiley’s seizures became life threatening just a few years ago, when they spread across 100% of her brain.
"Our happiest places are the gym, and anywhere outdoors. Kiley's very happy place is on the back of a horse"
Kiley has had the VNS (Vagus Nerve Stimulator) implant in her chest since the age of sixteen. This has greatly lessened the time of her grand mal [sic] seizures, which used to last, at times, forty-five minutes a stretch. She wears a magnet on her wrist to swipe across the implant when she has a seizure to lessen the severity and the amount of time the seizure exists. A year ago, she had major brain surgery to literally save her life, which left her the opportunity of being at least 60% seizure free. She currently still lives with a VNS implant, while taking Depakote, and CBD oil.
Talk us through your diet. Do you have a particular pre/post workout meal?
We continue to live a pretty holistic life. We eat all organic, sugar free, gluten free… and are very keto diet based. We don’t do very many carbs, except before a major run.
What is your biggest adventure to date and what was your latest adventure?
I would say our biggest adventure to date was kayaking the Chicago [shoreline on] Lake Michigan towards Navy Pier, to watch the summer fireworks. It’s a three mile kayak trip to and from the pier! Our latest adventure would be hiking Starved Rock State Park in Illinois to see the frozen waterfalls.
"Our biggest adventure was kayaking Lake Michigan in Chicago... it's a three mile kayak trip to and from the pier!"
Tell us a bit about ADAPT Sensory Studios.
We’re working on opening a sensory gym in our area for specially abled individuals and their families. ADAPT Sensory Studios has been a dream of ours for a couple of years now. We began to realise how certain physical activities done repetitively helped Kiley handle her sensory overload due to her autism and other challenges. The goal for our studio, is to allow these individuals to learn how to handle their sensory overload issues, while inviting their families into the center, introducing healing physical activities, healthy choices. etc. to better allow them successes as they enter the adult world of employment, and functioning successfully within their communities. [Kiley will be one of the co-owners of ADAPT.]
Why did you start your Instagram account?
We began our Instagram page to share and encourage others who face challenges, to get out there and do the things that make you the happiest. Just because you live with challenges, doesn’t mean you can’t live a very adventurous and fun life. You may just have to live it a little differently.
"We did not know a lot about epilepsy when Kiley was first diagnosed. We learned quickly through reading, and the local epilepsy foundations"
What would you say to someone who has recently been diagnosed (or their family)?
We did not know a lot about epilepsy when Kiley was first diagnosed. We learned quickly through reading, and the local epilepsy foundations. We would say to any family that is just being diagnosed that there is hope for a semi-normal life. Don’t be afraid to explain, and teach exactly what happens within the realm of epilepsy. The more we educate, the less of a stigma there is with the diagnosis. Diet and exercise are a huge component in possible control of the episodes. Just because you are diagnosed with epilepsy, doesn’t mean that you cannot live a life of success.
If you would like to see more of Kiley and Kathleen’s adventures, be sure to follow them on Instagram @LifeAdaptive.