Eight-year-old Ethan is a boy who enjoys his sunny Florida life. Despite having a hereditary disease causing spastic paraplegia, he has shown that he is open to new adventures.
Part of 2LIV4's mission is to provide new and meaningful experiences for people with a wide range of disabilities. Learning to ski downhill and navigating a sit-ski is an example of an amazing activity that is enjoyed by many. In 2023, Ethan Nitz received a scholarship from 2LIV4, which provided him with the opportunity to spend a week in Breckenridge, Colorado, learning to adaptive ski. So last December, Ethan and his mother, Jenn, boarded a flight from their home state of Florida to embark on a snowy journey to try something new.
Ethan, who lives with spastic paraplegia, a hereditary disorder, enjoys spending time watching television and playing on his iPad. His physical limitations require him to use forearm crutches, working hard daily to increase his strength, mobility, and endurance. Over the summer, he spent three weeks at SMILE, a Sensory Motor Integrated Learning Experience that treats children with developmental disorders.
Ethan’s mother is an occupational therapist who specializes in intensive rehabilitation. Her knowledge and expertise provide a guiding force in Ethan’s development and accomplishments. As she embarked on the journey to take her son to Breckenridge for his ski experience, her own sense of adventure came into play. After renting a large SUV, she was introduced to the hazards of mountain travel in Colorado. She endured the drive through a severe snowstorm, which took her into the middle of the night. Fortunately, her son slept through it, awakening to safety at the hotel.
For Ethan, the trip provided five days of all-around amazement. He was assigned two excellent volunteer adaptive instructors, spending two to three hours each day on the mountain. Although he required total assistance and adaptive instructors to navigate the sit-ski down the slopes, there was a sense of being on his own with new people who became friends. Besides his success learning ski techniques and using the poles, Ethan also enjoyed playing in the snow and warming up in the hot tub. Engaging with fellow adaptive skiers and developing new friendships were also key to Ethan feeling positive about his experiences.
For Ethan, who has not been involved in many sporting activities, this new challenge required a leap of faith. Since his upper body is unaffected by his disease process, he has tried playing in an adaptive baseball league, which he loved. However, participating in winter sports didn’t seem like an option for him until he received the scholarship. After his week at The Ski Spectacular, he described some of his feelings, including his fear of the height of the mountain. Riding the chair lift was something that he expressed being anxious about. But once he experienced going fast down the mountain, he said it was “good!” He described feeling “excited and lucky,” expressing happiness to be out of his wheelchair.
Video description: A young boy wearing a green t-shirt and missing his two front teeth sitting in a wooden chair talks with his mom about his experience skiing in Breckenridge.
Sharing her perspective as a parent, Jenn expressed her enthusiasm for this experience, encouraging other parents of children with disabilities to go for it! She describes Ethan as having the absolute best time doing something new and exciting. Making new friends and becoming part of a group proved invaluable for him. The adventure set in motion a new outlook on outdoor fun for Ethan. Jenn’s hope is that he will continue to seek out new opportunities.
Being able to participate in a weeklong adaptive ski festival is something his mother believes he will “forever remember.”
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