Two-hundred and fifty seizures a day means approximately one every 17 minutes. This was once the reality for 16-year-old Rylan of Regina.
Rylan’s seizures started at the young age of two. They indicated something serious, but at that point nobody knew it would take such a toll on his future development and quality of life. As his mom Jacqui helplessly observed her son’s troublesome moments, she knew that parenthood was going to look different than what she had anticipated.
“I cried a lot when the seizures began,” says Jacqui. “All you can do is hope your child will pull through and live a happy life, and with Rylan we were in a constant state of worry.”
With only a few peaceful moments in between seizures, Rylan’s days were spent basking in the calm before the storm. Rylan’s condition meant much of his childhood was spent in hospital in Regina and Saskatoon as well as and children’s hospitals in British Columbia, Manitoba and Alberta. Numerous medications affected Rylan’s ability to walk and resulted in severe regression that curbed his ability to communicate effectively.
At age 10, Rylan had his first brain surgery at BC Children’s Hospital so that doctors could better monitor his seizure activity. Only two days later, Rylan had four seizure focal points surgically removed. Twenty-one days after the dramatic surgery, he was airlifted to Regina where he spent another two months at Wascana Rehab for physical therapy, occupational therapy and music therapy.
“Surgery was scary, but the surgical team at BC Children’s Hospital did a great job at preparing us for what to expect,” said Jaqcui.
In 2018, Rylan failed a modified barium swallow study that doctors performed to see why he was having problems swallowing and choking on food. The result had severe consequences – he could no longer eat or drink anything by mouth. After surgery in Regina, Rylan is now tube fed. It was a tough adjustment, but Rylan kept a courageous attitude and showed positive signs of recovery.
Just as things were looking up in November 2018, doctors called to let Jacqui know that Rylan would need another surgery. Before they knew it, the family was back in Saskatoon and revisiting the same fears that came with each surgery. A vagus nerve stimulator was implanted into Rylan’s chest and a wire lead was wrapped around the vagus nerve on the left side of his neck. The procedure is helping to shorten his seizures and improve his recovery. Until Rylan turns 18, he will continue to need the support of the new Jim Pattison Children’s Hospital.
“Rylan has not allowed his medical challenges to stop him from being a ray of sunshine in the lives of others. His normal day probably includes seizures, medication and a feeding tube, but it also includes high school, laughter, love, playing outside, cuddling on the couch, bike rides and more.” said Jacqui. “He smiles often, has a big heart and loves going to summer day camp where he goes bowling, swimming, to the movies, museums, and gets to hang out with his friends. It isn’t without challenges, but it is pretty great.”