Seventeen-year-old Mirai is his mother Lillian’s pride and joy. “Mirai is a very joyful, joyful, joyful child,” Lillian said. At only two-and-a-half months old, Mirai was rushed to CHEO after he began having seizures. “I had never seen a seizure before, so I was like terrified,” Lillian said. The seizures were originally controlled with medication, but they were unrelenting and led to frequent visits to CHEO. Sometimes, Mirai’s seizures would last for 10 to 15 minutes. “We quickly had a routine where we would come home from CHEO, we would repack the suitcase, leave it there, because we knew we would be going back again at some point,” Lillian said. Despite anti-epileptic medications, Mirai’s condition worsened. “We counted 103 of these myoclonic jerks,” Lillian said. After years of testing, Mirai was diagnosed with Dravet Syndrome — sometimes referred to as Gervais Syndrome — a severe form of epilepsy. “It’s a genetic mutation for one of the key genes that are responsible for brain activity and development. There are very little treatments that are known to reverse or cure this,” Dr. Rohail Kumar said. “There was a relief in having the diagnosis but also just the biggest despair because when you read about Dravet syndrome, the news back then was not that great,” Lillian said. At the age of four, when the pair were living in Japan, Mirai suffered a series of life-altering seizures. “The damage to the brain is very severe, his vision was gone and I always say, ‘I went into the hospital with one child and came out with a new baby,’ because now I had to learn how to take care of this child that I had. He was my child, but I did not recognize him,” Lillian said. Lillian says she and her son found support at the Roger Neilson Children’s Hospice. The pediatric palliative care facility is partnered with CHEO and provides specialized care to children with life-limiting illnesses and their families. Kumar says the mission is to improve the lives of those living with life-altering conditions. “It’s about psychological support, emotional supports, spiritual support, connecting the community providers, the community members together,” Kumar said. Lillian says she and Mirai take advantage of the activities and respite offered by the hospice. “I think they made me see that even though what I’m dealing with is really difficult and I have that despair, you can still find joy and hope in your life,” she said. Kumar says community donations are vital to their efforts. “It allows us to provide care to patients like Mirai, it’s important for us to be able to support mothers like Lillian. It’s important to support team members, who are in there, doing this job on a daily basis,” Kumar said. As they continue to navigate their difficult journey, Mirai and his mom find strength in each other. “Some days, when I’m feeling down, he’ll just give me a smile, almost like telling me, ‘Everything is going to be okay,’ and I’m just like, ‘Okay, we got this,’” Lillian said. The 43rd CHEO Telethon continues all week on CTV News Ottawa, CTV Your Morning Ottawa and Newstalk 580 CFRA, with the grand finale on CTV Ottawa on Saturday from 4 p.m. to 7 p.m. You can make a donation to the CHEO Telethon online at www.cheotelethon.com or by calling 613-730-CHEO (2436).
