Meet Mirai
Mirai was an infant when he started having frequent seizures. They were the result of a rare form of epilepsy known as Dravet Syndrome. He and his mother spent so much time at CHEO that there was always a suitcase packed and ready at the door for the next time he would need to go. Then, when he was three, Mirai suffered a devastating episode of medication resistant cluster seizures. Mirai survived, but he lost his mobility and vision as well as his ability to eat and communicate verbally. His mother, Lillian, says the chatty, active boy she knew, was gone. At Roger Neilson Children’s Hospice, Mirai receives the palliative care he needs, and Lillian has access to support through counselling and much needed respite to manage life as a full-time caregiver to Mirai. She says that her RNCH ‘family’ has helped her focus on celebrating each and every day and discovering a sense of community while making memories with her beloved son.
Donations matched up to $15,000 by
