A local mom is sharing her son's story to reach others going through similar trials.
Sheldon Steuart was diagnosed with Battens disease with leukodystrophy symptoms in 2016 at the age of nine.
"He was laughing, talking, just a regular, crazy kid," his mother shared.
Eve Courchene is the mother of three other children in addition to Sheldon and says she was shocked when their son was diagnosed.
Batten disease is a rare disease affecting the nervous system that is often diagnosed in children between the ages of five and 10. It is terminal and particularly affects the brain.
"We knew something was wrong," said Courchene, referring to herself and Sheldon's father. "We were almost in a living nightmare and I still can't explain it."
Courchene says that they are an active family, and first noticed something wrong with Sheldon when he became off-balanced and started falling often. He had an MRI done, but had deteriorated to the point where he could no longer walk up a flight of stairs by the time they received the results.
"He was forgetting things, like he forgot how to ride his bike," Courchene shared. "He's been a water baby, he's been swimming since he was small and the pool that we went to, he forgot how to jump off the diving board. It's those changes that we noticed right away. That's how we knew something was wrong."
Sheldon has both good and bad days, moves around in a wheelchair, and often experiences up to multiple seizures a day. Despite this, he is still attending classes at Ralph Maybank School.
"They're fantastic with him there," says Courchene. "Because he was still walking and talking and being feisty, a lot of the kids that are there now were there with him then so they still treat him the same, they still talk to him."
Sheldon's best friend, Ethan, is a huge blessing for her son, Courchene shared. "He still roughs him up and Sheldon just loves that," she chuckled.
Since his diagnosis, Sheldon has lost much of his mobility and speech. He is also facing loss of ability to eat and see, and will eventually develop dementia.
"I think the hardest part for Sheldon was when he wasn't able to eat anymore," Courchene said. "He had a big appetite."
Through all the difficulty that their family has faced over the course of Sheldon's illness, Courchene says it is Sheldon himself who has gotten them to this point.
"He's so amazing, even through everything he's very feisty, he's funny, he still has his sense of humour," shared his mother. "He goes through so much and he's battling so much in his life and yet he's still so happy, and that encourages us a lot as a family."
Hope, too, has been possible in the form of a trial treatment that Sheldon qualified for. The enzyme replacement treatment has allowed Sheldon to regain some movement, and he has started walking again with assistance, as well as gaining back some of his speech abilities.
"We're starting to see that feistiness come back."
Sheldon, who will turn 12 in July, is only the second child in Canada to receive the treatment. While it is no cure, Courchene says they are always hopeful.
Courchene hopes that her son's story will be able to encourage others who may have a child suffering from a long-term illness like Sheldon.
"Just hang in there. There are times I want to give up, but then I see his smile," Courchene shared. "I'll have a really bad day and he'll start joking around with me.
"It's definitely worth it to hang in there for them."
Anyone interested in following along Sheldon's journey can find more information here.