More than four years after their son Alistair was born, Julie and Jason MacMillan still don't know what is causing his disability - and they're fine with that.
Although Alistair can't talk, walk or sit on his own, doctors have been unable to determine the source of the problem and after years of tests the family has come to accept that the condition will, at least for now, remain a mystery.
"He's an undiagnosed kid with a whole shwackload of anomalies and we just accept it. It is what it is," Julie said. "Maybe one day we'll pursue it more but the geneticist we did follow for the first few years doesn't have a clue [what Alistair's condition is]. They've put him in a database with all those anomalies and they just don't know why he is what he is."
Born with a rare congenital malformation - Alistair's stomach and intestines were in his left chest and pushed his heart to the right side of his body - doctors had told the family if Alistair made it through the early days of life he would likely make a full recovery. He spent his first six weeks in a neo-natal intensive care unit in Vancouver and then was transferred to UHNBC where he received three more weeks of care before being discharged.
When Alistair was an infant, Julie said she noticed he was "floppy" but she attributed that to his early medical challenges and figured at some point he would progress through it. Soon after his release from hospital, he started having seizures, but those were soon controlled with medication.
But as the months and years went along and Alistair remained unable to sit on his own or communicate verbally, Julie and Jason realized there was more to their son's condition.
"It really wasn't until he was about three or even three and a half that we started saying we had a special-needs child," Julie said. "No specialist ever came out and said we did, we just started piecing things together - he's floppy, he couldn't sit, he couldn't stand, he was having trouble holding his head up."
Alistair is classified as having global developmental delay, a catchall term that's used when physicians can't pinpoint the cause of the problem. But the lack of a firm diagnosis means the family has no idea what to expect as Alistair gets older.
"There's no prognosis with Alistair, he's in a class by himself," Jason said.
After years of having Alistair undergo many tests to try to determine the underlying issue, the family eventually decided that all the visits to specialists in Vancouver was causing too much stress on everyone involved. Since they were no closer to figuring out the cause, they decided to take a step back and just work with Alistair at his current level. Other than his seizure condition, which is under control, there are no other major health issues Alistair faces on a daily basis.
"I think the hardest part for my husband and I was coming to terms and realizing he was a special needs kid," Julie said. "At the beginning you think, 'of course he's delayed' and you want to push and push and if we just put a huge amount of energy into the first three years we'll get him past this."
Although there are still many things Alistair can't do, Julie and Jason are encouraged by what he has accomplished as he continues to make progress. He communicates by making noises and by pointing to objects or flash cards with pictures of items like food, drink or wash clothes on them.
They believe he's been able to understand things more and more as he gets older.
Recently while Julie was reading to Alistair and his little sister Francis, he started turning the pages of the book on his own.
"That's really exciting, but a normal kid's parents may not even recognize that as a milestone. For us it's a massive feat," Julie said.
Like many other families with special needs children, the MacMillans only found out about Variety - The Children's Charity after they had Alistair. Recently they secured funding from the charitable group to help outfit their accessible vehicle with a lift to help get Alistair's special chair in and out of their car. Since Alistair attends the Child Development Centre daily during the week, the accessible car and lift have made things much easier on the family.
"It prevents me from having a bad back," Julie said, noting many parents of special needs children suffer injuries due to all the lifting that's required. "Our big thing is to try to stay fit and not be in a really bad state that way."
Variety is holding its telethon this weekend on Global, beginning at 7 p.m. on Saturday and running for more than 22 hours. The annual event helps raise funds to help special needs children and their families get the equipment they need and ease financial strains.
Among the entertainment that will be featured during this year's broadcast is Elton John, Mumford & Sons and tributes to Barbara Streisand and Bruce Springsteen.
Jason said he and his wife never understood the magnitude of what a group like Variety can do to help until they had Alistair and began living the life of being a special needs parent.
"It can be straining financially and [Variety] just makes it that much easier," Jason said.
More information about the telethon is available online at www.variety.bc.ca
