Colorado family gets the opportunity of a lifetime through Breckenridge Outdoor Education Center
Heidi and her husband Rob never imagined a day when their family of four could embark on a family ski trip.
They believed their days of escaping to the mountains to ski and snowboard were in the past since their daughter was diagnosed with a rare genetic disorder, Rett Syndrome. However, the employees at Breckenridge Outdoor Education Center completely changed the family’s expectations when they gave Ellie the gift of downhill skiing.
The family adopted Ellie in 2009 as the couple looked to begin a family in the Seattle, Washington area. For the first few years with Ellie, life was normal for the young family, but around Ellie’s second birthday, Heidi and Rob started to notice something was awry in Ellie’s behavior.
The life skills that Ellie had previously mastered started to dwindle, and she stopped progressing as she continued to grow.
Ellie was taken to many specialists for several years before she was diagnosed with Rett Syndrome at the age of 7 in 2015.
One reason why it took the specialists so long to diagnose Ellie with Rett Syndrome was because her case was atypical of most Rett Syndrome cases.
“It’s a genetic syndrome that we primarily see in girls,” said Dr. Tim Benke, Director of Research at the Children’s Hospital Colorado’s Neurosciences Institute. “When I say genetic syndrome, it’s not something that happens in families. It happens because of a ‘spelling mistake’ around the time the egg and sperm come together.”
The genetic misspelling occurs in the MECP2 gene, and it causes development issues for girls or boys after about a year and a half. Patients also often lose the ability to talk, use their hands and to walk or sit.
“It’s a really significant disease in terms of how much it robs people of their ability to do things,” Benke said. “They are in there, but they just can’t really get it out. With a lot of therapy, the girls and boys can do all sort of things like ski.”
Benke has been taking care of people with Rett Syndrome since 2002. He has been seeing Ellie for the last four to five years, ever since the family moved to Colorado in order to be closer to him.
As part of the therapy process Benke often recommends equestrian therapy or skiing since the activity stimulates the patient’s core and allows them to work on their balance.
It was a random invite from Rob’s best friend, Ed Bronsdon, that allowed Ellie to find herself at the top of a snow-capped mountain in Summit County.
“He was coming up to do some type kind of camp in Breckenridge, and we had just moved here when he called me and said that he would love to take Ellie skiing,” Heidi said. “We were like ‘no way,’ but we took her up. It was amazing.”
Before that point, the idea of Ellie skiing never crossed the family’s minds. It was because of Bronsdon that the idea became a reality.
Bronsdon also introduced the family to the Breckenridge Outdoor Education Center at Breckenridge Ski Resort, and the connection now makes it possible for the family to continue skiing.
Eillie has now gone on several successful ski trips. Her last adventure on the slops occurred this past March.
Due to the crowds present at Breckenridge Ski Resort, Ellie might have been overwhelmed, but the Breckenridge Outdoor Education Center equipped her with a bi-ski, allowing her to relax a bit while cruising down the mountain.
“She loved it,” Heidi said. “I hope we can get her back on skis because once you go on a bi-ski, do you really want to go on skis again?”
For the family, it was the Breckenridge Outdoor Education Center that made the ski trip so special since the staff made the experience stress free for everyone involved.
“You walk in and there is no stress because when you have a kid with special needs you always kind of stand out,” Heidi said. “When you walk into the BOEC its like you are with your people and no one cares. It is so great, and we love it.”
Heidi remembers one specific memory when Ellie was having a tough time walking across the village with so many people present.
Ellie was increasingly growing frustrated, but Heidi knew if she could get Ellie to the haven that is the Breckenridge Outdoor Education Center, everything would be OK again.
“Everybody just loves her, and everyone is great,” Heidi said. “They want to learn everything about her, they want to understand her, not just go skiing.”
Even though Breckenridge Ski Resort is now closed for the 2021-22 ski season, Ellie, Heidi, Rob and Ellie’s brother Rhys are all looking forward to skiing together next season.
“We are super excited,” Heidi said. “I had a hip replacement last year, so I wasn’t able to go when everyone went up the mountain with her. I am so excited to go and have our whole family skiing together. I just want to watch her do it. When we talk about it, she is excited.”
The family feel like they have truly found something special with the Breckenridge Outdoor Education Center — the staff is someone the family can trust to keep Ellie safe and help her have a good time.
“I don’t think they all realize how special they are and what a difference they are making in people’s lives,” Heidi said. “I think they see it but to be one of those people is huge. They give us something that our whole family can do together.”
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