Denise, Ariel and Ace Carr talk about the journey ahead, which begins next Friday. (Penny Coles)
Ariel Carr is used to facing challenges head-on.
The diminutive 12-year-old has been been overcoming obstacles since birth, and she’s a fighter, say her parents, Ace and Denise Carr.
She’s about to face the toughest battle yet.
The Crossroads student is about to undergo at least two surgeries, possibly three, and what is expected to be five to six months at Sick Kids Hospital in Toronto to correct her scoliosis.
The first surgery is called a halo traction application.
But that’s just the beginning. The goal is to straighten her spine, and once the halo is attached to her head, she will need to be on a traction bed with weights being added. The top of her spine, shaped almost like a candy cane, is curving into her neck, says Ace, showing the X-ray to explain. They will keep adding weights to the halo to help strengthen her spine for her second surgery, which will involve shaving some bone off the top of it, and possibly removing a rib — a growth spurt has caused her ribs to grow into her hip on her left side, and to press into her lungs.
It’s causing her pain, restricting her movement, and because of her reduced lung capacity, she tires easily.
At 47 inches tall, and 43 pounds, Ariel is small for her age, but the surgery and weights could add another inch or more to her height, says Denise.
Born two-and-a-half months premature in Hamilton, and weighing just three pounds, 15 ounces, Ariel had no movement on her left side — it was determined she had a stroke before she was born. She spent more than three months in the hospital, and with seven siblings at home, her parents spent that time going back and forth. They were also able to take advantage of the nearby Ronald McDonald House.
They were told Ariel would probably never walk — devastating news for parents to process. But as she grew stronger, she crawled, began standing up, and eventually walked, although with a limp. She also had trouble with movement in her left hand and fingers, but growing up in a hockey family, decided at an early age she wanted to play, as her older siblings did.
For those who know Ace and his family, that would come as no surprise — he is a local Mr. Hockey, well-known for his 18 years of coaching players at all levels in Niagara-on-the-Lake, and winning championships with his teams.
Thanks to daily visits to the Niagara Children’s Centre, Ariel progressed, getting stronger every year.
“I can’t say enough about the children’s centre. Everyone there is top-notch. They really went the extra mile for her,” says Ace.
So when Ariel said she wanted to play hockey, he took her to hockey school, but it was hard for her to keep up with the other kids. Her father and siblings spent time on the ice with her, and when she was five, her left leg improved significantly. “It seemed like it happened overnight,” he said.
Ariel played her third season in the atom division last year, and loved it. She learned to compensate for some of her physical difficulties, became a good skater, and impressed her coaches — including her dad — with her hockey IQ and ability to be in position. Her job was to take the puck up the boards and into the corners, and others would position themselves to get the puck from there to the net, although she scored a few goals herself.
She loved playing, she says, and the friendships with her teammates. She was excited to be able to move up to the peewee division this year, and her coach from her first years in atom, James Cadeau, was looking forward to coaching her again. But with the worsening condition of her spine, she was told that wasn’t to be.
Cadeau considers Ariel “an inspiration” to minor hockey — when she earned a most valuable player award, he told the crowd at the arena, “she just never gives up. She may be the smallest player, but she has the biggest heart. Everyone can learn from her.”
Ariel, who sits quietly with her parents as they talk about the challenges of the coming months, admits to being scared of the surgery. But the day last fall when the doctor at Sick Kids explained it to her, she went home and packed her bag for the hospital, says Denise — she wants to be better, to be free of pain, and to play hockey again.
It’s been a waiting game, with the family on 24-hour notice, listening for the phone call that would tell them it was time to head to the hospital. The surgeon said the wait for her particular surgery is usually about two years, but because of her condition, he would fit her in as soon as possible.
They’ve learned recently the wait is about to end — her surgery is next Friday. Her parents have been told one of them has to stay with her 24 hours a day, so this time, said Denise, there will be no Ronald McDonald House, she will be sleeping in Ariel’s room with her.
Denise and Ace were told to expect it to cost them about $5,000 a month — including time off work, the cost of Ace traveling back and forth from the hospital, Denise’s food while she’s there, and $20 a day for parking. Denise and Ace both work for a delivery company in St. Catharines, Denise on dispatch and doing the accounting, and Ace driving. While she will be the one spending the majority of time at the hospital, Ace will spell her, she says, so she keep up with bookwork.
The family has set up a GoFundMe page to offset the costs — to help, visit https://ca.gofundme.com/f/ariels-scoliosis-battle.
There is so much about the coming months that is uncertain, says Ace, “we have to take it one day at a time.” He’s a tough guy himself, especially on a hockey bench, and he admits to not being good at showing his feelings. But he can’t keep his emotions in check and his eyes well up as he speaks of what lies ahead for his daughter, and how difficult it is for them all to process the enormity of what the youngster is facing.
But he has confidence in the surgeon, who is just one of two in Canada who performs this particular surgery on children, Ace says.
He also did a great job of explaining to Ariel what he will do, in terms she can understand. “He said he was going to make her better. He exudes confidence, and I’m sure he will.”
Ariel has a $100 bet that she will end up taller than her sister, who is five feet one inch tall, and she’s determined to win. She jokes about the room service, and about her favourite double chocolate chip frappuccinos and cake pops she expects from the Starbucks in the hospital.
“She’s a tough cookie,” says Ace. “She has to be.”