HANCOCK, Mass. — Last weekend a steady stream of cars carried families who enjoyed their annual February break ski vacation in the Berkshires back to their daily routines, their kids brimming with exciting stories of skiing, snowboarding, tubing and more. 

 

Among them were Ellary Kinnane and Greta Baier, two high school sophomores with a rather unique tale of their own skiing adventure.

 

Kinnane, 15, and Baier, 16, are diagnosed with nemaline myopathy, and several other medical conditions. Nemaline myopathy is a rare progressive disorder of the muscular system, which requires the girls to breathe with the help of respirators. The weakness also affects Ellary's speech making it difficult for unfamiliar listeners to understand her.

 

This medical condition leaves both girls missing out on some of the fun things their friends do.  They can't go to a sleepover at a friend's house, for example, without a nurse or parent accompanying them.  In fact, Ellary's mom, Cindy Kinnane, says, "It's sometimes hard for the girls to make friends because they don't look like everyone else and they can't easily do what everyone else does."

 

The girls and their moms have been friends for over a decade, meeting in an online forum.  The Kinnanes live in Rhode Island and the Baiers in New York City.  Their first in-person meeting was at the Mystic Aquarium in Connecticut and over the years they've planned many outings together.

 

While Ellary had experienced skiing once before this year's trip to Jiminy Peak she had not been on a chair lift. Her first outing was limited to a small, beginner's hill.  She thought it would never be possible to ride a chairlift and ski down from the top of a mountain.

 

"We don't ski as much as we would like to because it's not really the family trip that you go on when you have a daughter that can't walk," Cindy Kinnane said. "Stride and Jiminy Peak made this possible. A ski vacation is now a possibility for this family."

 

A chance meeting at a dinner party last year set things in motion. Cindy Kinnane met Mary Ellen Whitney, the CEO and founder of STRIDE Adaptive Sports. 

 

Dating back to the 1980s, the mission of this nonprofit organization is to educate and empower individuals with disabilities in life-changing sport and recreation programs to sustain healthy, active and fun lifestyles.

 

As Cindy Kinanne learned about what Whitney's organization was all about, she asked if they could support two respirator-dependent individuals on a skiing experience.  Whitney said she would see what was possible and by November of 2023, the planning had begun.

 

There was a lot to set up, including finding the correct the sit skis.  Sit skis are skis that have a moulded bucket seat suspended above them that the user can sit in. There is a shock absorber below the seat, which makes the ride more comfortable for the user, and the seat is attached to the ski by a sturdy metal frame. The sit skis needed had to accommodate the girls' low muscle tone as well as have room for portable respirators.

 

Sit skis are tethered to volunteer coaches, such as those from STRIDE, and guided down the mountain.  Speed, turns and the path are controlled by the coach, though sometimes the rider can control direction by leaning their bodies one way or the other.

 

Cindy Kinanne had so many questions about equipment.  Could the chairlift accommodate the sit skis?  On the lift and on the mountain, how would an emergency be handled, such as if a respirator stopped working?  What if the lift failed and they had to be evacuated? Would the lift have to be stopped for a prolonged time to load the sit skis? 

 

The families also had to find hotels that could accommodate two powered wheelchairs.  They wanted to do this during the school break, knowing it's a very busy time for outdoor recreation and tourists in the Berkshires.  Was this possible?

 

This was a lot of work, a lot of researching and planning and coordinating.  The logistics and safety are always important. STRIDE staff and volunteers are accustomed to making sure it all comes together in a safe and enjoyable manner, but this was a much more complicated situation than most.

 

Finally, a February break visit to Jiminy Peak was all set.  Now, as long as the weather cooperated, the two best friends would add skiing from the top of a mountain to their list of mutual adventures.

 

They have traveled to Florida for camp several times, where they have swam underwater.   They have taken the subway in NYC where they have been to the top of skyscrapers, attended shows and visited museums.  They've gone boating and pumpkin picking and visited some of the Newport mansions in Rhode Island.  And now, they would experience the freedom and exhilaration of skiing down a mountain.

 

When asked why go through all of this for an afternoon of skiing, STRIDE 'A' team Coach Kevin Woodbury explained "It's about inclusivity, it's about recreation, it's about life-changing experiences."

 

Friendships also develop.  On a recent evening during the February break week, Woodbury and his wife joined one of his students and their family for dinner.  Woodbury began coaching the student when he was about half as tall as Woodbury and now the student towers over him.  Having dinner is an annual tradition for them now, as is several days of skiing together when the family comes to the Berkshires for their ski trip. 

 

Woodbury described another regular skier hugging her coach and saying she looked forward to her ski outing with STRIDE all year long. 

 

"She gave him a hug and told him she loved skiing with him.  It makes her whole year," Woodbury said.  "Stuff like that makes it all worth it."

 

On the day of their skiing adventure, Kinnane and Baier arrived at the lodge at Jiminy Peak well before the scheduled activity.  It took over an hour just to get them and their equipment securely strapped into the ski chairs.  Typically, the individual sits on the ski chair right outside on the snow, and within minutes they are ready to go.  

 

Bringing respirators along, providing the extra support needed due to the girls' muscle tone, and going through all of the vital communication plans that would ensure coaches, medical providers and skiers would be in constant contact all took a while. 

 

Finally, the team of coaches, family members, medical caregivers, Kinnane and Baier were ready.  Then the sit skis carrying the girls had to be transported out to the snow.  Since typically the sit skis are loaded right on the snow, even this had to be strategized.  Ultimately, flat carts were used to wheel the sit skis out of the lodge and to the snow.

 

For Woodbury, the ride down was like any ride down.  The snow conditions cooperated.

 

"It was beautiful tethering snow, just soft enough, just firm enough. The sit skis went right where we wanted them to go," he said. "We went a little bit slower than we might usually go, only because of the danger of rolling over.  Typically if a sit ski rolls over, the skier might laugh about it and it would be part of the ride.  With these girls, if the ski went over, we had ventilators in the bucket of the ski and we couldn't afford the chance.  But really when we were on the snow it was no different than any other sit ski lesson that we go out on.  We were out there having fun, tearing it up, everyone was laughing and having a good time."

 

While it was happening Cindy  Kinnane  said she was in awe of how the volunteers could guide the ski chair down the mountain with tethers, though she admits the thought did go through her mind, "What if they fall?"

 

When she asked her daughter if she was scared, Cindy Kinnane said her daughter said yes.  

 

"But as she kept doing it, with each run it became less scary and more fun," Cindy Kinnane relayed.

 

"After every run, we would ask them, 'did you like the speed? Did you have fun?  Do you want to go again?  Do you want to go faster or go slower?'.  They would communicate with us what they wanted to do," Woodbury said. "We got four runs in. From the top of the mountain.  We were able to go to both sides - we went to the left side and to the right.   When asked if we were done, we said 'we don't know, ask the girls.  We're here for them'."

 

Ultimately the girls decided to take four runs.  The truth of the matter is that even with all of their warm winter clothes padding them and the shock absorbers on the skis after a few runs the sit skis start to get uncomfortable.  

 

When asked if the trip was a success, Cindy. Kinnane said, "Ellary and Greta are already talking about their next trip to Jiminy Peak. They hope to make this a yearly trip. They describe their experience as 'very cool'.  It takes a village, but STRIDE and Jiminy Peak made this happen."

 

When Whitney asked the girls to rate their experience on the mountain on a scale of one to ten, the girls rated the experience as an eleven.

 

Whitney continued, "My thanks goes to our 'A' team of STRIDE coaches who knocked it out of the park on commitment, logistics and safety. My heart is full."

 

More information about the STRIDE adaptive ski program can be found at www.stride.org.