Ontario boys with cerebral palsy get life-altering surgery, gain cherished friendship
At the centre of a bright colourful room sit two children side by side. The boys, Alex and Carson, ages five and six respectively, are playing on a tablet, taking turns, laughing, and chatting.
“Finding Alex was fantastic. From the moment Alex walked in, Carson’s face lit up and his attitude completely changed,” recalled Carson’s mother, Carrie Deckert.
Alex’s mother, Sarah Winter, chimed in, “I hate to say it was love at first sight, but it really was!”
The mothers are also close friends, who finish each other’s sentences.
“Having Sarah here has been fantastic. It’s made this journey so easy,” said Deckert.
WATCH: Canadian boys form special bond after life-changing surgeries
The journey she is referring to has been a long, painful one for the boys who both have spastic diplegia cerebral palsy. Each of their families decided it was best for the children to pursue Selective Dorsal Rhizotomy (SDR).
The surgery, done on the lower spinal cord to reduce spasticity in the legs, was pioneered by Dr. Tae Sung Park at the St. Louis Children’s Hospital in Missouri.
It was offered in Ontario at the Hospital for Sick Children until the early-2000s when it was determined to offer no greater benefit to patients than standard orthopedic surgery. That meant families were looking outside the province to access the procedure with many heading to St. Louis.
But in 2017, the provincial government announced it would create a new SDR program to be offered in Ontario following longer-term studies which showed a good safety record for SDR and evidence for long-term reduction of spasticity.
At the time, then-Ontario Health Minister Dr. Eric Hoskins told Global News, “We’re always looking at opportunities to repatriate surgeries or procedures that up until now we’ve had to provide through OHIP for families out of province, generally in the United States.”
“Families were investigating going to the (United) States, many families actually did go to the U.S. and have the program, and we were really feeling with new evidence coming out showing that this was an important surgery to help improve the functional outcomes of our children that they should have this available to them in their home province,” explained Dr. Golda Milo-Manson, vice-president of medicine and academic affairs at Holland Bloorview Kids Rehabilitation Hospital.
“They don’t have to go out of province, they don’t have to go to the U.S., and our children are now being offered what’s being considered a gold standard for helping kids with the potential to improve their physical outcomes with the surgery.”
While the surgery is not for every child with cerebral palsy, both Alex and Carson were candidates.
“His confidence has greatly increased he has more mobility now. Before he was a full-time walker user,” says Carson’s mom.
For Alex, his mother said “his walking pattern has improved exponentially it’s amazing the difference. He’s just become that much more open and excited and eager to try new things and just ready to go.
“Before the surgery he couldn’t see the bottom of his feet and now he can touch his toes to his nose and that’s one of the biggest joys for him because he thinks he’s hilarious when he does it,” said Winter while laughing.
In fact, laughter has helped pass the time. It has been three months of intensive inpatient rehabilitation since the surgery at SickKids. But it is the boys’ newfound friendship that have proven invaluable for the mothers and their sons, who share a room, among other similarities.
“Having Sarah here has been fantastic. It’s made this journey so easy. We do everything together. We have meals together. We chat on the phone sometimes even when we’re not here just to vent or touch base,” said Deckert.
WATCH: Ontario children with Cerebral Palsy access life altering treatment, develop special friendship
The boys are preparing to leave Holland Bloorview, a week apart, and reunite with their younger sisters at home. As one family heads home to Elora and the other to Drayton, playdates for the boys, who have become inseparable, are already in the works.
“I like to hug my best buddy,” Alex said as he hugged a smiling Carson.
And as the boys walk down the hall, side by side. As always, Alex can be heard telling Carson, “I wish we were glued together.”
There will be plenty of physiotherapy to follow, but the best therapy for these boys has been the bond they built together.
“They’ve been really good to each other, they kind of feed off each other in good and bad ways,” said Deckert.
“But they’ve also been very motivational to each other they’re constantly giving each other praise for doing a good job.”
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