Maiya Kiy says the hardest thing was seeing frustration in his eyes.
Her father Dirk, could no longer walk, had lost significant mobility in his right side and was starting to lose the ability to swallow following a diagnosis of Amyotrophic Lateral Sclerosis (ALS). The motor-neurone disease slowly robbed her intelligent, and once vibrant, father of both voluntary and involuntary muscle use and there was nothing she could do to stop it.
“It was a huge adjustment especially because he is your dad and he was supposed to be strong and he is the man of the family,” she said. “It was all a big challenge especially when you are that age and you think your parents are invincible.”
Only 16-year-old when her father was diagnosed, the Salmon Arm resident could only watch as he eventually regressed to the point he could not longer feed himself or even swallow, needing a feeding tube to stay alive until the incurable disease took him in December of 2008. While his body was still able to digest his food, his lungs were no longer strong enough to expel carbon dioxide out of his body and he eventually died only three years following diagnosis.
Five an a half years later, Maiya keeps her father’s memory alive by supporting fundraising efforts including the ALS Cycle of Hope, attending a fundraiser at the Wicked Spoon restaurant where her mother Gerri Kiy and owner Kathy Bradford arranged an event on Day 1 of the one-week journey where 12 riders battled the the heat over 115 gruelling kilometres
from Kamloops to Salmon Arm.
“I know the journey that they will have to go through and it is heart wrenching because you know it affects every waking moment of their life and it affects everyone around them and having any normalcy in life is very heard to do,” Bradford said. “And the more people know about what is going on and what you are dealing with, the easier it is for them to at least reach out and be able to help. Eventually (the goal is) to find an answer, find a solution, find a cure.”
Maiya said she couldn’t agree more, happy to support the ride despite the team comprised entirely of riders outside of the community she lives in.
“I think it is really important to get the word out, especially with ALS because half the people I talk to haven’t even heard of it before and it is such a terrible disease,” she said. “Unless it hits home for someone they are not going to want to support it. This not a geographical community it is a situational community.”
The ALS Cycle of Hope continues Friday August 8 with a 76 kilometre ride from Salmon Arm to Vernon. For more information visit cycleofhope.ca
Arnold Lim is a photojournalist with the newspapers of Black Press and one of 12 riders on the ALS Cycle of Hope where 12 riders pedal from Kamloops to Keremeos, August 6-13. Check out his daily blog posts on cycleofhope.ca