Sofia’s journey to the mountain top

Adaptive Program changing lives

Word has spread about the FIRE Adaptive Snow Program, and on February 19, Fernie saw a new face on the mountain.

Eight-year-old Sofia Hirani glided down Fernie Alpine Resort in her sit ski, accompanied by instructor and certified care aid, Scott Courtemanche.

For years, Hirani battled with brain cancer, but has successfully overcome it. The result of many years of treatment has set her back physically, and she has had to relearn how to perform many of her basic functions, including speech.

Programs like FIRE (Fernie Inspire the Race to Empower) have allowed her to feel normal again.

FIRE’s founder, Grace Brulotte, launched the program in 2013 with the intention of allowing individuals with all kinds of differing abilities the opportunity to enjoy snow sports at Fernie Alpine Resort.

In their first season, they had five students. Now, they have over 20, some traveling internationally to participate.

Twenty-two-year-old Brulotte was born in Fernie with a rare condition known as Arthrogryposis.

This condition has caused her to be wheelchair-bound since the age of four, as the condition stiffens her joints, giving them only a few degrees of flexibility.

Sofia came to Fernie specifically to sit ski.

She had previously participated in some sit skiing in her hometown of Calgary, but her family finds that Fernie’s resort is more conducive for a child with special needs.

“You can stay right on the hill, and there’s restaurant’s right there. So if she gets tired or cold you can come right in, then you’re just 10 steps back to the base of the lift,” said Shelly, mother to Sofia.

Shelly says that Courtemanche really took to their kids, especially Sofia.

The kids had such a good time on their first day that they booked a second day out.

Courtemanche took Sofia up Deer Chair, and back down various avenues to the bottom. 2018 marks his second season with Sophia.

“Shelly asked me what I wanted for myself after the lessons were done,” said Courtemanche.

“Money can never cover the payments I get. Look at Grace, how far has she has come in the two-and-a-half years we’ve been doing this.

“If I can take a student that thinks they’re going to be left out and put in corner for the rest of their lives, and not really be able to participate in something they see somebody else take advantage of every day… I can think of nothing better to do with my time.”

Sofia is the middle child in a family of three kids.

In May of 2014, she was diagnosed with brain cancer. She first underwent surgery, which paralyzed her.

It also resulted in her becoming temporarily blind and mute. She slowly got her vision back, but couldn’t talk for six months.

Some of her speech returned during this time, but during this time she underwent three rounds of high-dose chemotherapy, three stem cell transplants, lumbar punctures, MRI’s and more.

After all this, the family thought the cancer was gone, but it returned. Sofia then needed high-dose radiation treatment.

Doctors thought that proton-therapy might be best for her, but this treatment has not yet made it to Canada. As a result of this, the family had relocate to Houston.

It was estimated she needed at least 50 high-dose radiation treatments.

“They hadn’t had that many kids who had done her type of treatment, and then immediately followed it with radiation,” said Shelly.

“We were warned that she might develop more brain damage from that, but we were also told that we didn’t really have a choice.

“The cells that were still in her brain were obviously so strong and so resistant, she basically had the atomic bomb of chemotherapy.”

Five days a week, Sofia was given anesthetic, put in a mold, at which time her brain was radiated, and super radiated around specific areas.

Shelly remembers her skin being severely burnt; she also lost all her hair as a result of this.

After close to 60 treatments between December 2014 and February 2015, Sofia and her family were able to return home.

Test results came back in May, and again, they thought they had gotten everything.

But in the summer, Sofia started to once again lose her ability to talk, and walk.

“And it never quite came back after that,” said Shelly.

The inability to walk and talk was a result of swelling in the brain from the radiation treatment. To control the swelling, Sofia had to go on steroids for over a year.

While on the steroids, her immune system plummeted, causing her health to deteriorate.

Sofia has been off steroids for a year, this summer. She is currently progressing through speech therapy, occupational therapy, physiotherapy, and emotional therapy.

Over time, MRI’s have become less mandatory, spacing out to once every three months.

The cancer has affected many things, including her balance, and response time. Although her speech is delayed, and she may voice a thought a minute after a question is asked, Sofia is still very cognizant of what’s going on around her.

“She’s a fighter, and she’s a really happy child,” said Shelly.

This experience has caused the Hirani family to restructure how they live.

Now, they focus on doing things as a family, despite physical limitations. They consider this ‘a new normal’.

The Hirani family had a great time in Fernie, participating in the adaptive program. Speaking to this Shelly believes there still aren’t enough programs that exist today.

There are several adaptive programs in Fernie. Although some, like an adaptive dance program, work great for the family, other programs are so expensive that it’s not feasible for them.

Additionally, there are many camps that exist, but not for children who are in need of assistance. Sofia and her family have received much support through the Kids Cancer Care program in Alberta, which helps the family through many kinds of programming.

Of the FIRE Adaptive Snow Program, Shelly says it is phenomenal.

She says that not only is it affordable, it’s also safe. With some adaptive ski programs, students are tethered to the ski instructor. In Fernie, instructors guide the sit skis. Shelly hopes that one day, Kids Cancer Care Group and the Fernie adaptive ski program can collaborate.

Courtemanche first met Sophia as she was recovering from her treatments. At the time, she didn’t have very good balance or communication skills.

“Over the past year, the leaps and bounds that she has taken and the gains that she’s made personally on physical, emotional and mental levels is incredible,” he said.

“To see the joy that she gets; she likes going fast, she loves making the turns, it’s so rewarding.”

He added that he holds no expectations of the students that enter into the adaptive program.

His only requirement is that they take in everything he can offer as an able-bodied person.

“For someone who never thought they’d get out of the living room, let alone down the street, to see them on the top of the mountain and to see the reactions is mind-blowing.”

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