For all intents and purposes, Thomas Lachance is just like any other teenager.
He’s a video game fanatic, and outside of his secondary four classes runs a Youtube channel called ‘MiniMasterTom,’ where he uploads play-by-play videos from favourite games like Fortnite and NHL 2019.
The 15-year-old loves hockey, and has even had the opportunity to meet some Habs VIPs, like head coach Claude Julien and Marc Bergevin.
Right winger Brendan Gallagher has his devotion, however – inspiring Thomas to beat the odds, and hopefully one day take to the ice himself.
For years, playing hockey has been the ultimate dream.
“If I was able, I would play,” he explained. “After my surgery, I want to play for sure.”
Because of a rare genetic condition, Thomas relies on a wheelchair or mobility scooter to get around. His joints, spine, and knees are twisted, and while he can stand alone for short periods, he often gets uncomfortable and unbalanced.
But mother Annie Prevost says her son’s physical limitations don’t hinder his spirit.
“Thomas is a guy who loves life,” she said, adding that he never complains about his plight.
In fact, Thomas has enough humour to joke that his hands – although deformed – are perfect for holding a video game controller.
CTV Montreal followed Thomas for over four months, documenting a landmark procedure that will change the course of his life.
Thanks to a dedicated team of medical professionals, and a groundbreaking surgery, Thomas can look forward to taking small, but critical steps towards some time on the ice.
What is diastrophic dwarfism?
Deformed feet and hands are one of the hallmarks of diastrophic dwarfism, a rare genetic disorder that affects bone and cartilage development from birth. (CTV Montreal)
Thomas, who hails from Beauce, was born with Diastrophic dwarfism, also known as Diastrophic dysplasia.
It’s a genetic condition that affects cartilage and bone development, and individuals with the disorder are normally of short stature – with short arms and legs – and joint problems affecting mobility.
“He had very severe deformities of his feet that made it almost impossible to stand or walk,” explained Dr. Reggie Hamdy, an orthopedic surgeon on Thomas’ care team at the Shriners hospital.
“It’s one of the most severe dysplasias that exists,” said Dr. Peter Glavas, another orthopedic surgeon.
Thomas' heels didn’t touch the ground, permitting him only to tiptoe around for a few seconds at a time, so experts at the Shriners Hospital developed a specific surgical strategy to help him.
"There is no standard surgery for this case," Hamdy added. "Every case is individualized."
Surgeries: Then and Now
Scans of Thomas' foot taken inside the operating room in July indicated to his medical team the proper placement of screws as they attempted a total reconstruction of his left foot. (CTV Montreal)
First, Thomas underwent a spinal fusion – a ten-hour procedure that carries a risk of total paralysis - because scoliosis was threatening his breathing.
That surgery, however, was a success, and prepared the family for the next big operation.
“His dream of standing and walking will come true,” Dr. Hamdy said.
But for that to happen, the orthopedic surgeons would have to complete a complex procedure, wherein Thomas’ feet would be taken apart and rebuilt.
The care team plotted their course as best as possible by using models created by a 3D printer.
“[I’m] a little nervous because it’s a big surgery, and if it works, it will help me a lot in life,” Thomas told CTV Montreal ahead of the exploratory procedure.
Last July, the surgeons got to work – removing a small bone in the foot because of the severe deformity.
“We cut some of [the bones], we reshape them, we replace them – all the soft tissue, the tendons,” Hamdy added.
There was no roadmap to follow, and doctors had to make decisions as the procedure progressed.
“This is the most challenging one I’ve been involved in,” said Dr. Glavas of Thomas’ five-hour surgery.
After months of healing and uncomfortable physiotherapy, Thomas and his care team reunited to assess his new – and well designed – left foot.
Now that he can rest his heel parallel to the floor, Thomas’ gait is much-improved.
“The best thing for a surgeon, as a physician for children, the best dream is if you can make a child walk and stand – that is the most rewarding thing,” Hamdy added.
What’s next?
Thomas is all smiles as he discusses the things he's looking forward to after the next procedure to reconstruct his right foot - things like driving, and playing hockey. (CTV Montreal)
As part of his rehabilitation, Thomas has to do foot exercises at least once a day. Although arduous, and at times uncomfortable, he says he’s motivated by his upcoming 16th birthday.
“I’m looking forward to succeed in my life – and be able to drive my car like everyone is doing,” he said.
The operation to correct his right foot will take place at the Shriners hospital this spring.
“[The staff] are very nice with people. I was here for 11 weeks, and it was like my home,” Thomas said.
Prevost says she’s consistently inspired by her son, his tenacity, and desire for independence.
“[This] opens a door towards autonomy, and we’re very happy,” she said.
For the first time, Thomas is able to brush his teeth, fix his hair, and get ready for school while standing up.
In March, he'll be in New York City to see his favourite hockey team, the Montreal Canadiens, play at Madison Square Garden
"It will be awesome," he said.
As for his message to the care team?
"Thank you. I love you," Thomas added.