By Gord Bowes, News staff
Calum Sumner has been in some sort of medical distress for most of his short life, but with his ever-present smile it doesn’t appear to get him down.
He was in extreme respiratory distress a month after his birth, says his mother, Leslie. For the first four months, he could move and was hitting milestones like any other healthy baby.
Then his body began to shut down.
Doctors knew it was neuromuscular disorder, but they couldn’t pinpoint exactly what it was or what Calum’s future would hold.
Last year, just before his seventh birthday, Calum was finally diagnosed with spinal muscle atrophy with respiratory distress (SMARD). It is so rare, his mom believes he is the only person in Canada to have the affliction.
Sumner describes it as similar to muscular dystrophy or ALS, except that the starting point for Calum was near-total paralysis.
“He is a happy little kid, with a great sense of humour and amazing patience,” says Sumner. “However, when he is unhappy he can grind his teeth and get your attention quickly.”
“I always say he’s got lots going on upstairs, he’s just trying to figure out how to let us know what he’s thinking.”
Calum is a member of the local Beavers pack, attends summer camps and participates in the choir at Ancaster Meadows elementary school, where his sister Abby helps him to beat a drum when he signals her.
Sumner is currently on leave from her teaching job at Hill Park Secondary School. Calum, who is on life support though he is able to stay at home, requires constant care and the family has not been able to find enough qualified nurses recently.
“This job is outside of a lot of nursing realms,” says Sumner.
Sumner notes she’s not complaining, there just isn’t enough care available to take advantage of the 50 to 60 hours a week of nursing the government will provide.
Calum has also been without a nurse at school, compounding the problem.
Friends have organized an “all you can eat wings night” fundraiser for Calum on May 14 at the Copetown Community Centre.
“Obviously, being the only person in the country with this disorder there are no societies, committees or foundations out there to support Calum,” says Jenny McConnell, a fellow Hill Park teacher who organized the event.
Tickets are $20 ($10 for children 12 and under; kids under 5 free). They can be purchased at Hill Park Secondary School, Ancaster Community Services in Ancaster Library and Dundas Valley Orthodics. For more information, email McConnell at email@example.com.
Donations to help the Sumners can also be made at the event or at Teachers Credit Union account 6223515.
The money raised during the event will go a long way to helping the family with the expenses they face. With all the medical bills the family has, it’s nearly impossible to make purchases like a new accessible van.
“Mine is on its last moment,” says Sumner. “If that goes down, so does the quality of life for Calum because then he is stuck at home. That would be horrible for him, especially with summer coming.”
Sumner says they also need to get a backup power generator hooked to the home’s electrical supply. When the power was out as a result of the ice storm last December, the family was without power for four days.
A neighbour helped by making runs to get gasoline for the small portable generator that runs the basic life support system and recharges the lithium batteries that power the portable unit.
“I need a generator that clicks on right when the power goes down,” says Sumner.
Ideally, they would like to make backyard more accessible for Calum so he can be in the midst of his friends rather than stuck on the sidewalk watching them play, and purchase accessible toys, an eye gaze-controlled computer so he can do things like read a book by himself, and replacement batteries for his portable life support system so Calum can get out in the community rather than be tethered to an electrical outlet.