Heather Harris' son Clark is nine months old, with bright blue eyes and spiky blond hair, and there's a good chance he won't live to see his tenth birthday because of a rare disorder.
Clark Harris has Pontocerebellar Hypoplasia type 2 (PCH2), which is among a group of genetic conditions that affect how the brain develops. Those with the condition typically have atypical brain development, problems with movement and impaired intellectual ability.
"Right from the beginning he had trouble learning to breastfeed and that sent us in to see his doctors early. They first flagged the size of his head as too small. They were worried his brain wasn't growing and he wasn't making eye contact," said Heather Harris in an interview with Craig Norris on The Morning Edition Friday.
"It's every parent's worst nightmare."- Heather Harris
"At three months when he first started having muscle spasms – his whole body would spasm over and over and over again – that's when we knew we were dealing with more."
Heather and her husband Matthew, who live in downtown Kitchener, believe they are one of about five families in Canada who have children with PCH2, including one in Hamilton and one in St. Thomas, Ont.
"We were at Sick Kids [Hospital] and we had about 10 doctors in the room, and they gave us this diagnosis and just said, 'Don't look on the internet, you're not going to like what you see and we're not sure what's out there is accurate,'" said Harris.
"It's every parent's worst nightmare, right? You take your kid into the hospital with the hope that it's just something about him growing that's going to work itself out, and then you find out the worst possible scenario and it's still hard to believe," said Harris.
Caring for Clark not easy
Those with Pontocerebellar Hypoplasia have an underdeveloped cerebellum, the part of the brain that controls movement.
"So [Clark's] very fidgety and jittery and he can never stop moving," said Harris.
Caring for the Clark is not easy, she said.
"He's very difficult to hold on to if he's having a bad day. He's very strong, so his spasms make him arch backwards and it's really hard on your arms. Because what he likes is pressure, constant pressure all the time to kind of help him stay tight so he doesn't have to spasm as much. It's pretty intense," said Harris.
Because of how rare PCH is, Harris says a Facebook group for other families who are caring for someone with the condition is her first source of support.
"On there, there are children who are 10, 19, 20 that are living beyond what they're supposed to, and that's where I go when I have a question, that's where I go when I'm having a bad day. They have the information that the doctors don't," she said.
"This disease is so rare, that the doctors can't tell us," said Harris, when Norris asked what the future looks like for Clark.
"We just have to really live moment to moment. You can't think about the future, because you have no idea what it's going to be. So we just hope for a good day and try to get through it together," said Harris.
Harris and her husband were told that Clark would probably never learn to walk, and was unlikely to live past the age of 10. A careworker said he would need a wheelchair, and advised them to find a home that was accessible, said Harris.
The family is holding an online auction in May in order to purchase a wheelchair accessible home. More information can be found on their Facebook page.