Surrey boy diagnosed with rare eye condition at just four months old defies the odds to learn how to ski

Beyond the spotlight of the 2026 Winter Olympics, the community sports club Adaptive Snowsports Aldershot (ASA) in Hampshire is on a mission to transform the lives of adults and children with disabilities and additional needs through snow sports.

Among its some 100 members is 10-year-old Harley Chang, from Surrey, who was diagnosed with Septo-Optic Dysplasia at Great Ormond Street Children’s Hospital at just four months old.

The rare condition affects Harley’s optic nerves and has left him visually impaired with no light perception.

The diagnosis came as a huge shock to Harley’s parents who were told that he would need a lot of extra support and would have to learn braille and use a white cane.

Following Harley’s diagnosis his mum Genie made it her mission to ensure he could still experience as much of the world as possible along with his nine-year-old brother Jacob.

When Genie, a keen snowboarder, heard about ASA she jumped at the opportunity to introduce both boys to winter sports.

She said: “I thought it would never be possible to enjoy sports like skiing when I first found out that Harley was blind, and to hear that there was a club that welcomed all disabilities was such a joy.”

The mum-of-two is now one of ASA’s volunteer disabled ski guides and says skiing has brought her sons together in ways she never thought possible.

“It’s wonderful as a parent to see both children, who are very different in terms of ability, come together over learning to ski. There are not many clubs available that accept all family members and all abilities. ASA gave us a space and made us feel a part of something special,” she said.

Overcoming the odds Harley is now able to ski independently and can bond with his brother on the slopes.

Genie said: “There is always lots of chatter in the car after the sessions at Adaptive Snowsports Aldershot, and I can tell they have both enjoyed themselves, pushed themselves and are proud of themselves.”

As well as visual impairments, ASA, based at Alpine Snowsports Aldershot, caters for members with a range of conditions including Cerebral Palsy, additional needs, and learning disabilities.

The club also supports skiers who are recovering from a stroke. ASA’s fully trained volunteers are always on hand and specialist equipment available includes ski-carts and sit-skis.

At the club’s two-hour monthly sessions, ASA also hosts the Special Olympics Surrey (SOS) skier team who are Special Olympics GB accredited.

The SOS group includes team GB skiers Alice Willans, 26, from Farnham, and Stefan Nakoneczny, 35, from Twickenham, who both scooped medals at the Special Olympics World Games in Turin last year.

Alice, who has autism and a mild learning disability, won gold in the Super-G and silver in the slalom competitions and Stefan, who has autism and learning difficulties, won a gold medal in the men’s advanced slalom skiing category.

Stefan, who has very limited speech, developed his love for skiing during a family holiday aged 14.

Remembering Stefan’s first introduction to skiing his mum Liz said: “We were visiting some friends in Vermont and decided to get some ski lessons for our three children.

“Stefan couldn't understand the lesson and so stayed apart just watching his siblings following the instructor.

“Suddenly we realised that he had disappeared and was going up the drag lift on his own.

“Stefan got to the top and just came hurtling down the mountain in a straight line. The instructors were shouting for everyone to clear the slope anticipating a collision, but Stefan just came to the very bottom, twisted his hips to make the perfect stop and sprayed the gaping crowd with snow powder.

“We had never seen him so ecstatically happy. On reaching the bottom, he said, “Good ski”.’

On their return to the UK Stefan’s parents searched for a group that could encourage their son further and discovered ASA.

Liz said: “The group is led by inspirational people who give up their time to support the budding athletes.

Without ASA Stefan, and many other young people like him, would not have this opportunity to learn new skills and to make new friends in such an inclusive and supporting environment.”

Fellow Special Olympics star Alice became an ASA member in 2019 after struggling to stay involved in sports after leaving school.

She soon joined the SOS skier team and has never looked back.

Reflecting on competing in the Special Olympics World Games in 2025, she said: “I had one of the most amazing experiences and the best experience of my life so far.

“I felt it was much more than just a sports event, it was showing the power of sport and inclusivity.

“I felt very proud to be part of a team of such great athletes, coaches and support staff.

“My favourite moment of the whole games has to be when I got my gold medal moment on the podium after I had won the super giant slalom race in my advanced division. I had near felt anything like it.”

On what being an ASA member means to her, Alice, who has made an entirely new group of friends through the club, said: “ASA means community, ASA gives us all a sense of belonging.

“It’s inclusive and everyone can be themselves and take part in snow sports with confidence.”

ASA, which is run entirely by volunteers, relies on fundraising to purchase the best equipment for the needs of its skiers and snowboarders and to pay for use of the dry ski slope and insurance, as well training for its volunteers, helpers, and guides.

The club also fundraises to keep its costs down for members and has not increased its membership fee for 10 years.

The annual fee for members is just £10 for a junior, £18 for an adult, and £23 for a family.

In a bid to help more people learn to ski and keep its membership fee low, ASA has become a registered cause on easyfundraising.

When the club’s supporters sign up to easyfundraising and choose Adaptive Snowsports Aldershot (ASA) as their cause, the retailers they shop with via the easyfundraising website or app – from M&S to Just Eat – will automatically donate a percentage of their purchase to the group without adding any extra expense to their bill.  

Sarah Baldwin, who is the volunteer coordinator at ASA, said: “Easyfundraising is great for us. It’s so easy to use and doesn’t cost anything and the funds raised help us to keep our membership fees down.

“Every contribution helps. We’re not a club funded by a large organisation we’re run by a group of volunteers and every bit of support counts.”

Adaptive Snowsports Aldershot has raised more than £3,000 through supportive shoppers on easyfundraising. Support the work of the group with every online shop here.

As well as raising funds, ASA is always looking for volunteers to help run its monthly sessions and allow more members to join.

More information on voluntary roles at ASA can be found on the club’s website.