Six-year-old Gage Daoust is going home to die in the loving arms of his family. "We will be bringing Gage back to Red Deer on May 13," said Kim Tucker, Gage's mother, a former Innisfailian.
Six-year-old Gage Daoust is going home to die in the loving arms of his family.
"We will be bringing Gage back to Red Deer on May 13," said Kim Tucker, Gage's mother, a former Innisfailian. "He will spend some time at the Red Deer hospital until we set up our home for his special bed, then he will come home. We have decided that once he passes away, we will let him go as a family."
Doctors at Stollery Children's Hospital in Edmonton, where the boy has been since April 10, told Tucker last week they had done everything they could for Gage and could do no more for him other than to have him transported back to Red Deer where he can spend his final days.
Born with muscular dystrophy, Gage was admitted to the Edmonton hospital last month for surgery on his heel cord to increase his mobility.
After being released the following day, the family was back in the hospital four hours later and Gage slipped into an unresponsive state from which he never fully emerged.
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.
Since the breathing tube was removed on April 25, he has continued to breathe on his own but his feeding tubes are still connected. Tucker added the doctors have told her that Gage is almost like a newborn baby.
"He can hear, and understand," said Tucker. "The doctors seem to think he cannot see, and at best, he can see shapes and shadows. I have been told the doctors have done everything they can for him, and that's why he is coming home.
"I want to cherish every moment I have left with my son, and give him the best quality of life I can," she added.
Tucker said she will be able to set up her home environment properly for her dying son, adding she needs a hospital bed and some advanced equipment.
"We will need a bed like he had at the hospital that can be raised and lowered," said Tucker, adding the cost is $875.
Meanwhile, Kristen Spatz, night manager of the Fox and Hound, has started a Facebook fundraiser, which can be found at www.gofundme.com/8d9sjk, with a goal of $10,000 to help the Tucker family.
"To date, we have raised $5,280 from people with donations still coming in," said Spatz. "I have known Kim and her family for a long time and cannot imagine what it would be like to be in her situation. She said Tucker, who moved to Red Deer in 2004, still has many close connections to Innisfail and the surrounding area.
Spatz held a silent auction fundraiser at the Fox and Hound on May 19. Results of the fundraiser were not immediately available.
"Kristen is my angel, and the money she has raised will help me buy a bed for Gage," said Tucker. We will still need more medical equipment, which I do not have right now."
While the mother's heart-wrenching struggle continues, she remains with her son just to watch him smile.
"His favourite song is Sexy and I Know It and he smiles the entire time it is playing," said Tucker. "We listen to it a lot together. This is about the 'now', and I want to cherish it."
