Ellie is now thriving as much as anyone could’ve hoped for. Dr. Benke predicts that her current condition is as good as it will get without any future medications, but in the meantime, the family approaches each day as it comes. According to her parents, she has on and off days where one day things just click and other days where everything is much harder. But they continue to communicate with Ellie the only way they know how.
“We call it eye talking,” says Rob. “It’s almost like she looks at you and sends a bunch of information to your brain. We’re, in a way, telepathic with her.”
“She’s talking, she just can’t get it to come out,” says Heidi. “Oh trust me, there are times when she’s talking. She definitely lets you know when she is mad and she communicates with her eyes a lot – and all Rett girls do that – they’ll look at you for yes and away for no. So we get a lot of answers just by looking at her.”
So when one of Colorado’s favorite pastimes came up, one can only imagine what kind of eye contact was elicited by the idea of skiing. A trip to the BOEC was in order, and it just so happened that a family friend of over 40 years, Ed Bronsdon, is the Executive Director of a similar organization in the Pacific Northwest called Outdoors for All. Ed was miraculously on a ski vacation in Colorado at the time and offered his 37 years of teaching experience to Ellie and the family.
But before any skis could hit the slopes, because of the way Rett syndrome affects her muscles and the use of her body, getting ski boots on her feet is extremely difficult. Ed contacted longtime Outdoors for All board member and Category Merchandising Manager of Hardgoods at Christy Sports, Tracy Gibbons, and she made it her mission to find boots that would meet Ellie’s needs. Gibbons collaborated with her colleagues and landed with Danny, the manager at Christy Sports Ski & Snowboard in Breckenridge, who was ultimately able to track down a pair of rear-entry ski boots, making it possible for Ellie to successfully get her feet in and out of them. It was a team effort from the very beginning to give her every chance to get out there and ski.
“We had tried a lesson with just standard boots, and trying to get Ellie’s feet into those was really, really hard,” says Bronsdon. “So a rear-entry boot was going to be critical. Getting that success for her meant that we could then move forward. As simple of a win as getting a foot into a ski boot meant that we could then maintain that rapport and move it out to the snow.”
“Danny went above and beyond for Ellie,” says Heidi. “He even went so far as to get her skis to match her jacket. He’s our hero too! He was practically in tears when we told him how great she did.”
Matt Gold, CEO of Christy Sports, an annual BOEC sponsor, says in a recent press release, “Ellie’s inspiring story demonstrates the power and beauty of mountain and nature sports and the higher purpose of what we do at Christy Sports.”