Ryan Quilty greets you with a heart-warming grin and a shy lowering of his head, and gently grasps your hand when you reach out to him.
At age 20, Ryan is happy and full of life, despite his many challenges.
He was diagnosed at the age of six months with tuberous sclerosis — an uncommon genetic disorder that causes benign tumours that can develop in many parts of the body. For Ryan, that has meant multiple tumours in his brain, kidneys, eyes and skin that have caused him health problems over the years and countless trips to the Janeway Children’s Hospital in St. John’s from the west coast home where he grew up. He also suffers from epilepsy, autism and developmental delay.
All of these challenges, however, have not stopped him from enjoying many activities with his parents, Jeff Quilty and Tracy Chafe-Quilty, and his older sister, Jenna. They took him hiking, snowshoeing, snowmobiling and kayaking when they lived in Rocky Harbour.
The family moved to St. John’s last fall.
Now, through Easter Seals, Ryan is involved in a number of other inclusive activities such as wall climbing, bocci, music and swimming. And he’ll soon be in the saddle with the Rainbow Riders therapy program.
One thing Ryan has always wanted to do that he physically could not, however, was skate. Balance issues prevent Ryan from skating.
But he loves hockey. Ryan gets excited when he watches it with his dad.
He says with a laugh that he is a “San Jose” (Sharks) fan, though his father is trying to convert him to the Toronto Maple Leafs.
Throughout his school years, whenever his class went to the arena for skating, Ryan had to sit on the sidelines and watch.
His parents have searched for years for adaptive skates for Ryan, without success, but he has never given up his dream of being able to skate.
“We were walking through (a sports store) one day and he said, ‘I wish I could play hockey,’” Tracy said. “And we thought we should probably search again for some kind of way that we can get him on a pair of skates. But nothing past the bob-skates for a toddler exist. There’s nothing for adults.”
On Jan. 9, after seeing information about a new business — Atlantic Pro Sports in Paradise — being shared on Facebook, Tracy decided to give them a try.
“I thought I would contact them to see if there was anything they knew of that existed on the market that would permit Ryan to be stable enough on skates to enjoy skating,” Tracy said.
The owners of Atlantic Pro Sports, Colin Anthony and Craig Thistle, began a search for such a product. Thistle was in Toronto at the time doing a course and searched locations in that city.
They concluded there was nothing on the market that they could order in for Ryan.
“Just saying, ‘No, sorry, we couldn’t find anything,’ wasn’t good enough for these guys,” Tracy said. “They asked us to come in to discuss an idea. They told us they were going to fabricate a pair of skate supports for Ryan.”
Anthony and Thistle are members of, and trained through, the Maximum Edge skate sharpening and maintenance system. They opened Atlantic Pro Sports in Paradise last November.
Anthony said their friend, Donnie Gosse, works at the Pennecon Energy Services Group (fabrication, welding) facility in Chapel Arm, and they asked for his help.
“We sat down one night and drew it up on paper,” Anthony said. “Donnie went back and through trial and error came up with it. He dropped off the product and, with some fit and finish work here, we managed to get the supports attached to the skates.”
Anthony’s 14-year-old son, Nick, even got in on the action. Nick plays bantam hockey and donated a pair of his old skates and a helmet to Ryan.
“That was Nick’s skates and helmet that he didn’t use anymore,” Anthony said. “He was happy to give them to Ryan.”
The supports are made from aluminum, which was precisely angled, cut and welded, then trimmed and filed. Copper rivets were used for extra strength to secure the supports to the skates.
Tracy said her family couldn’t believe the effort that Anthony, Thistle and Gosse went through for Ryan.
“These people were strangers. They didn’t know Ryan’s story, and we are blown away by the care and kindness that they have shown to Ryan,” Tracy said. “They were in a position to make a difference and they did. We need more people and more businesses like this in our world.
“Ryan was so happy, and he was so proud when myself and his sister Jenna took him down to The Loop (at Bannerman Park). You should have seen how proud and excited he was to take part in an activity that he normally had to sit coldly on the sidelines and watch everyone else enjoy.”
Anthony and Thistle are engineers with full-time jobs who are trying to expand their pro sports business. Helping Ryan has been something they say has had a huge impact on them, as well.
And since the word got out, they already have two more requests for specialized skate supports.
“We started this business based on positivity and we are trying to keep positive energy in anything and everything we do,” Anthony said. “What we did for those people … we didn’t have any idea the impact it would have on them. We didn’t know Ryan, but through this we learned his story.”
Thistle said he was still in Toronto when Ryan tried out his skates, and he saw pictures and video of him at The Loop on Facebook. He said he began sharing the story with everyone around him.
“To see through social media the impact, and I did talk to Tracy through social media, to hear how happy Ryan was and their whole family, it was amazing,” he said. “I was showing everyone. It was pretty cool.”
Gosse said workers at the Pennecon facility in Chapel Arm are pretty proud, too.
“We put a picture of Ryan up in our shop because everybody in our shop had a little part in it,” he said. “And we watched the video on Facebook. Just to see him get on that ice, that was enough for us.”
Tracy said some of Ryan’s favourite places to go in St. John’s are the parks. Whenever they take him to Bowring Park, he wants to see the Peter Pan statue, the Fighting Newfoundlander and the Caribou that represents the Royal Newfoundland Regiment.
Downtown, he likes to visit the National War Memorial and the Terry Fox Statue, and loves to hear the story of Terry Fox.
And thanks to the ingenuity and determination of Anthony, Thistle and Gosse, Ryan now can enjoy skating at Bannerman Park.
“It may have been 20 years through this storm of tuberous sclerosis, but he is no doubt the sunshine of our lives,” Tracy said.
“He is not only alive, he is living. He has something to look forward to every day and his smile just gets brighter and brighter.”
Ryan Quilty can brighten up a room with his smile. It’s contagious.
In the first few months of his life, however, doctors wondered if it could ever be a happy life for Ryan. But there was no holding Ryan back, and that smile has rose above all the other challenges.
Ryan started to have infantile spasms (a type of seizure) when he reached six months of age and had to be airlifted from Corner Brook to The Janeway Children’s Hospital in St. John’s. It was there he was diagnosed with tuberous sclerosis.
“It was Jan. 28, 1998 to be exact, a cold and stormy day,” Tracy recalls. “The first attempt to fly on air ambulance was actually cancelled due to the storm so we had to wait for the next day.
“The diagnosis of tuberous sclerosis was devastating. Until then we had never heard of it before as it is a rare disease.”
Jeff said doctors painted a negative picture of what life would be like for Ryan and the whole family.
“They said we’d have a very difficult life and it was possible he might not be able to talk,” Jeff said. “I remember after that meeting I went to his crib and I just broke down. It was a grieving period for sure.”
But Jeff and Tracy weren’t going to give up hope. And Ryan wasn’t going to let the disease stop him from enjoying life and inspiring those around him.
“It may have been 20 years through this storm of tuberous sclerosis but he is no doubt the sunshine of our lives,” Tracy said. “Now we do everything we can to make tuberous sclerosis a part of our lives but not all of our life. We involve Ryan in everything we do and we think it has really helped him.”
In Rocky Harbour, where the family spent the past 15 years, Ryan attended Gros Morne Academy which is an all-grade school. Once Jeff and Tracy were able to ensure that the proper supports were in place for Ryan, he settled into school life.
“Getting him the supports he needed, getting all the things he needed to support a positive learning environment to enable him to reach whatever potential he could took a little bit of work at first,” Jeff said. “But the people who took care of him, the student assistants and the special needs teachers, and children and staff at the school, were absolutely wonderful.”
“That’s why we stayed so long in Rocky Harbour,” Tracy added. “The school was just so great for Ryan, they were like family. There’s no greater feeling than dropping your child off at school and knowing they were safe for the day and in good hands, that they would be protected.”
Tracy said that after Ryan graduated from Gros Morne Academy, they knew it was time to move to St. John’s. Jeff, a medical laboratory/X-ray technologist, had obtained a job with Eastern Health on Bell Island and the family made the move to St. John’s.
“All Ryan’s doctors are here, his sister is going to university here, my twin sister lives here, so it made sense for us to move here,” Tracy said. “Ryan loves St. John’s. He always loved coming here. There are so many fun inclusive things to do in the city.”
She turned to Ryan and asked him, “Are you happy?”
“Of course!” he said, motioning toward her with his hand, and wearing the biggest of smiles.