Kim Tucker sat on the couch of her Red Deer home cuddling her six-year-old son, Gage Daoust, who smiled as he played with the Hot Wheels car in his hand.
“Do you like your cuddles with mom, Gage?” Tucker asked as she looked deep into his eyes.
The young boy smiled wide, looked into his mother's face and mouthed the word “mom” as he tried to speak what he desperately wanted to say.
Barb Tucker, Kim's mother-in-law, sat on the other end of the couch and looked with wonder on the scene as Kylie, Kim's five-year-old daughter snuggled in to be part of the special moment.
“We would never have expected this to happen, ever,” said the elder Tucker. “The doctors from the Edmonton Stollery hospital said he would improve, but we never expected this to happen.”
Daoust's mother put her ears close to his mouth and listened intently for the sounds of “mom” as he continued to try to speak.
Diagnosed with leukodystrophy last month, a condition which slowly disintegrates cranial white matter, Gage can only battle time. Two weeks ago, it was estimated that 75 per cent of his white matter was missing.
“We have been through an amazing journey,” said Kim. “I don't know how people have heard about Gage, but he is on prayer chains across Canada, and there are probably 200 people who have helped us in one way or another since mid- April. Some I know, and some I don't. I am truly amazed.”
Kim spoke about the woman from Innisfail who called her up and offered a hospital bed only to be told he had one, then called back to see what kind of food he ate. She was told he did not eat “regular” food.
“She called back,” said Kim. “Then she asked what kind of toys Gage liked, and wants to help any way she can.
“Even yesterday, when we had to get Gage's medication which cost $250, we were blessed,” said Kim. “A friend from Innisfail put in $100 to help pay for the medication which helps him fight posturing.”
Barb went on to explain that posturing for Gage means that his muscles stiffen up and he has difficulty breathing.
Kim spoke of other offers from family friends such as a family trip to Calaway Park in June, which is being donated to Kim and her three children. She added the efforts of Kristen Spatz have helped her immensely and are greatly appreciated.
The grandmother has seen people go out of their way to help Gage and Kim every day.
“When I was in Edmonton visiting Gage in the hospital, a lady came to the hotel I was staying at and donated two bottles of nutritional supplements which she claimed will help Gage heal,” said Barb. “Gage is our miracle child and every day we see something new and watch him fight for his life.”
Daoust's medical regimen is complex.
“He gets medication at 2 a.m., 8 a.m., 8:30 a.m., 2 p.m., 4 p.m., 8 p.m. and 10 p.m.,” said Kim. “It's a good thing the early morning dose can be put into his feeding tube otherwise I would be exhausted every day.”
Kim brought Gage home from the Red Deer Regional Hospital Centre on May 27 and noted the transition was difficult.
“Not only did I have to make our home hospital bed friendly which meant putting a second bed into the room by the kitchen, making it a tight fit,” said Kim, “but I also had to look at another vehicle, which my mother-in-law gave to us after having it inspected and licensed. My little car's seatbelt was too small for the car seat we needed for Gage. My townhouse has three levels, which makes it tough now with me having to move the wheelchair up and down the stairs, so I am looking to move to Innisfail.”
Barb Tucker recalled the first time she saw Gage in the hospital in Edmonton.
“He was hooked up to tubes, and was not moving at all,” said Tucker. “We weren't sure he would ever wake up again. My grandson did not move for three weeks and when they took the breathing tube out of him, he began to move, and now he can hold his head up, which is a miracle in itself.”
While Gage is battling leukodystropy and muscular dystrophy (which he was born with), Kim and her children are avid supporters of the MS Walk which is held every year. In 2014, the walk will be held on June 7.
“My family and I will be participating in the MS Walk,” said Kim. “We do it every year and this year it is more meaningful for us.”
In the meantime, Kim and Gage will be visiting Edmonton for two checkups this week, one presumably to remove the cast off his left foot so the results of the surgery to release his tendon can be seen. She and her family face a future of frequent doctors' appointment and visits from medical professionals.
In the midst of her struggles, a ray of hope has emerged.
“My precious little boy is seven years old today,” said Kim. “Tomorrow, May 31, we are having a birthday party for him at a park in Red Deer with balloons and games.”
She returned her gaze to her son, still in her arms and whispered softly to him.
“All we can do is live one day at a time, and enjoy Gage as long as we can,” added Kim. “He'll be seven tomorrow and I hope we can see eight.”
