Readers can lend support, too, during Sun Christmas Fund for Variety Village
When Eliana McArthur finally came face to face with her brother Jacob’s future, her heart broke.
Eliana was 8. Jacob was 9. Their family was in Arizona for a conference on Duchenne muscular dystrophy (DMD).
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They were there because Jacob was diagnosed with DMD at 3. The genetic gremlin had not yet begun to do its worst. Jacob seemed a typical bustling boy. The wheelchair was three years away.
James and Teena McArthur had prepared their kids as best they could, but the Phoenix session was a thunderbolt.
Eliana saw older boys with advanced DMD, in wheelchairs tethered to oxygen gear. Shocking facts flashed on screens, such as: Life Expectancy, Mid-20s.
“It was pretty scary,” Jacob, now 14, tells me.
Eliana was crushed. After, in the family’s hotel room, she was inconsolable.
It is one thing to talk in abstract about the terminal muscle-wasting disease assailing your brother. It is quite another to see it up close.
“When we look back at old videos of us playing around,” says Eliana, now 13, “you can tell he was a little slower and I do see him falling, so I must have known, but I didn’t realize the significance. Only as I got older, I realized I had to be more careful with him.
“Every day is precious now. We don’t know how many we have left and I try to be a good sister and help him as best I can.
“I’m his mother hen.”
Says Jacob: “’Well, mother hen isn’t really the right word. My sister is just very kind and patient.”
“He’s my best friend,” says Eliana.
She pushes his wheelchair, holds his hand after surgery or during medical tests — and leaps to his defence.
At September’s Volt hockey World Cup in Sweden, Team Canada — Variety Village kids including Jacob — ran into an older, rougher local squad.
A Swede rammed Jacob’s Volt power cart into the boards, nearly tipping him. The game devolved into chaos. Jacob looked stricken.
In the stands, his sister broke into tears. “I have to go to him,” she told her mother.
In a flash, Eliana was by her brother’s side, consoling him and glaring at the astonished ref.
Jacob was not hurt, but his sister’s anger was well founded.
Barely two months earlier, the boy tumbled from his wheelchair and broke the fragile femurs in both legs. An embolism got loose and his lungs partially collapsed. At Sick Kids, they weren’t sure he’d make it, period, let alone make it to Sweden.
Yet, there he was, in the thick of battle on the World Cup floor.
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Not his first battle, though. Not by a long shot. Not his last, either.
Jacob had played soccer until he started falling down with alarming regularity. Next thing he knew, he had a wheelchair.
He had played coronet — as does Eliana — in a Salvation Army junior band, before he lost too much lung power and arm strength.
“There have been losses along the way,” says his mom, Teena. “We grieve a bit every time.”
But let’s not dwell on losses. They are inevitable with Duchenne muscular dystrophy.
There are triumphs, too, including the simple fact Jacob is among Variety’s most upbeat kids. I do not think there exists a photo of Jacob without a smile. Even with massive casts on his broken legs, he beams and gives thumbs up.
True, he has asked his parents, in the darkest corner of a night, “Am I really going to die in my 20s?”
Yet he is also quick to point out more and more DMD patients are reaching 30, as steroids and other treatments slow the disease. Plus, you never know when a breakthrough will come.
The World Cup was a triumph, too, the boarding incident notwithstanding.
Variety’s Team Canada won silver in its division and Jacob was a top scorer. Speedy Volt cards have a hockey blade out front and are guided with a joystick, so the only mobility you need is one finger.
Another win: Make-A-Wish has approved Jacob for its dream quest, and he’s mulling choices. Something with the Maple Leafs. Jacob is an Auston Matthews fan. Eliana likes Mitch Marner. Or the Ferrari test track in Italy. Jacob loves cars. Enzo Ferrari’s son died of DMD at age 24.
Meanwhile, this weekend, Jacob will wheel onto the stage at Roy Thomson Hall, leading a choir into the show, Christmas With The Salvation Army.
Eliana, a soprano, will be by his side. As always.
northchannelmike@gmail.com
HAPPY GIVING TUESDAY
If the day feels warmer than usual, there’s good reason. It’s Giving Tuesday.
Instead of sending me a card and a new tie, may I suggest a donation to the Sun Christmas Fund for Variety Village? This will help that iconic Scarborough sports centre geared to kids with disabilities help Jacob and his friends get the most out of their lives.
You can donate directly at sunchristmasfund.ca. Watch for promo ads in the Toronto Sun through New Year’s for details, including draw prizes.
Giving Tuesday seems a perfect time to join these kind folks, recent donors to the Christmas Fund:
Ida Reed, Cambridge, $25
Isaac Kashton, Toronto, $35
John & Sandra Weddell, Newmarket, $30
Patricia Adair, Toronto, $50
Teresa Greensides, Thornton, $50
Robert Kelly, Caledonia, $50
Norma Morris, Toronto, $100
Raymond Richard, Oshawa, $25
Elizabeth & Ernest Barnes, Etobicoke, $200
Gloria Adams, Scarborough, $100
Brian Walmsley, Toronto, $100
Bernard Donaghy, Toronto, $125
Josephine Derry, Oshawa, $50
Dennis Parsons, North York, $200
Vince Fraser, Niagara Falls, $100
Greg Short, Aurora, $100
Lesley Short, Aurora, $100
Daniel Terbenche, Scarborough, $200
Dieter Gembus, Brampton, $200
Patricia Stanbridge, Oshawa, $50
Steve & Debbie Cochrane, Mississauga, $25
Dr JoAnn Purcell, Toronto, $100
Don & MaryDel Rosie, Barrie, $60
Sharon Boynton, Nobleton, $250
Shirley Illingworth, Ajax, $250
Nancy Marklinger, Bolton, $50
Chris Clubine, Bradford West Gwillimbury, $50
Marilyn Wall, Toronto, $35
Bob and Nori Bainbridge, Innisfil, $100
Garry Davis, Markham, $5,000
Richard Booth, Toronto, $200
Vicki Earles, Toronto, $200
David Woodley, Burlington, $50
Archie Allison, Scarborough, $100
Carl Glatt, Markham, $50
Marilyn Tannahill, Scarborough, $50
Total: $8,460
Total to date: $13,910
