In my life, there have been just a handful of experiences that were so powerful that they moved me to tears. One of those was following my first volunteer experience with Adaptive Sports Partners of the North Country. Being new to the North Country, I was eager to get involved in the community and contribute in a positive way. ASPNC seemed like a great way to do that. On my first outing, I worked with a young participant who was skiing for the first time. Her parents looked on with video camera in hand. I could tell they were excited, but a little nervous. With the help of ASPNC volunteers, she started making her first turns down the slope. Her parents were cheering and smiling from ear to ear. They were bursting with pride and joy. So was I. As I became more familiar with the organization, I learned that my experience was not unique. There are many stories like mine that ASPNC volunteers, participants, and families can share. Below, Joanne Huff, who has been involved with ASPNC for more than five years with her daughter, Sasha, shares the life-enriching, life-changing impact that ASPNC has had on her family.
When my daughter, Sasha, first experienced seizures 15 years ago, they occurred infrequently. However, they insidiously gained momentum and frequency. Eventually, she was diagnosed with Lennon-Gasteaux, a form of irretractable epilepsy. As Sasha’s neurologist continued tight oversight, I felt helpless as we watched Sasha’s seizures go from once or twice a year to once or twice a month to several per week. At one point she experienced nine grand mal seizures in one day. I will never forget the day I sat with our doctor and said out loud something I was so afraid to say. “I am concerned that we are approaching her ultimate demise,” I whispered to the doctor in case Sasha could understand. The neurologist most definitely saw the fear and grief behind my eyes. He offered one last medication trial and off to the pharmacy I went.
I can still see the calendar so vividly, checking off each day that passed without a seizure. “Seven days in a row could not be right, could it?” I wondered to myself rechecking the math. But then, one week turned into many. Time continuously strung together until, remarkably, we hit one full year. Fast forward to today as I write this, when one year became seven.
So much has been gained since then and one thing that came out of that difficult era was the gift of time. As a family, we went from never knowing what any given day would bring to being able to make plans. We wanted to see what life could look like for a healthier Sasha. It was around this time that we met Adaptive Sports Partners of the North Country, like a swift, unanimous answer to all of those “what ifs?” …
When we first crossed paths with ASPNC five years ago, I had numerous conversations with founding Director, Sandy Olney. I instantly connected with her vision for the organization that individuals with disabilities be treated with the same regard and support we all ask for in this life; to be provided equal opportunities. As such, Sandy presented a tremendous array of sports to consider for Sasha. Sanfilippo Syndrome is a degenerative condition which affects cognition as well as the central nervous system, which impacts the physical capabilities of the body. What Sanfilippo Syndrome has not impacted is Sasha’s love of trees, adventure, and people. ASPNC staff and volunteers recognized all of this in Sasha, and so we eagerly started with hiking and biking.
I will never forget our first outings, in awe of both the equipment options at our disposal and even more in awe of the people operating that equipment. Repeatedly, I met individuals—college students, retirees, and everyone in between—giving their time and whole hearts to this organization, to the participants, to our family, and to one another. Simply put, every time we returned home from an adventure, I felt a deep rooted happiness. Noticeably, Sasha did too.
Five years have passed since then, and it’s been gratifying to witness our new Director, Thomas Shovlin, embody the same mantras that Sandy carried with her when running ASPNC. We continue to engage in an ever-expanding list of sports and recreation. In 2019 alone Sasha has enjoyed snowshoeing, Alpine skiing, hiking Mt. Washington (at Sunrise!), Indoor Rock Climbing, Adaptive yoga, social hours, 5ks and Boccia. We’ve befriended volunteers who we’ve known since the beginning and met many new ones along the way, all who embrace a “can do” attitude that has opened our world so much. As I’ve told others before, ASPNC has changed the entire trajectory of our family’s life. I will never forget July of this year, and the experience of climbing to Zealand Falls with Sasha and a small army of ASPNC volunteers. We were a team of roughly 25, climbing boulders and muddy roots at an incline until roughly 2.8 miles in when we approached Zealand Hut. At the final push we all cheered, a stranger jumped on the team and helped hoist the trail rider (hiking chair) to the finish, disappearing back into the woods as quickly as he appeared. I pinched myself as I sat on the stairs of Zealand Hut having lunch next to Sasha. In that moment she was just another hiker. A volunteer then approached and asked if Sasha wanted to see Zealand Falls, and so a small group surrounded her to help safely navigate the wet rocks. We took photos surrounded by waterfalls and in that moment, I was just another Mom, hiking with her daughter.
Sasha’s days continue to be filled with what she loves; people, trees and adventure. This is because of the tireless efforts of an amazing organization. As we reflect with gratitude this holiday season, I can’t think of a better gift than either your financial support, or the gift of your time, to ASPNC. Thank you!
~Joanne and Sasha
It’s all because our generous and supporting community of volunteers and donors like you that make life-changing experiences like these possible for so many. Your support allows us to bring the thrill of sports and outdoor recreation to the lives of others. In fact, this past year, ASPNC and its volunteers provided more than 2,500 activities sessions to nearly 250 people with disabilities. Your donation of any amount during this holiday season will help us continue to deliver on our mission to enrich the quality of life for people with disabilities through year-round opportunities for sports, recreation, and wellness.
Thank you for your compassionate support and help in giving the gift of sports, recreation, and wellness for people of all abilities.
Adaptive Sports Partners of the North Country