Mountainbiking next on list
Azwhayn Nirvana Skye has never met anyone else with giant axonal neuropathy or GAN, a rare degenerative nerve disorder which he developed as a toddler.
‘‘I suddenly stopped being able to walk. I lost all balance and kept falling over.’’
These days the Mt Albert student, 23, has a hand-powered car and his next goal is to get an off-road hand cycle so he can mountainbike with his mates.
He is using the crowd funding website Pledge Me to try to raise funds for the bike.
‘‘I hope that there might be some people out there who have more money than they need and think this project is a good idea.
‘‘The bike has full suspension and just looks cool. All boys want something that looks cool.’’
He describes his childhood as a constant struggle; as doctors tried to figure out what was wrong with him.
From age 5 he had three operations to lengthen his Achilles tendon and fuse his ankles and foot joints, but it was not until he was in his early teens that he was finally diagnosed.
He knew very little about GAN until he came across an American foundation called Hannah’s Hope Fund, set up by a woman whose daughter has the disorder.
‘‘The fund sent me to the University of Carolina in the United States to get tests done,’’ Mr Skye says. ‘‘ The tests showed I had no reflexes. The doctors in the US were a lot more understanding and knew what GAN was.
‘‘One day I will be able to walk but the next I might need to be on crutches or be using a walking frame, or need my wheelchair.’’
Despite his condition Mr Skye has ticked off scuba diving, sky diving and a South Island road trip from his list of things to do.
He is studying a Bachelor of Business at Unitec and would like to do a culinary course at AUT.
‘‘One day I plan to open a restaurant but I want to enjoy life for a while.
‘‘The other day I was driving back from the Coromandel and I thought ‘Man I am lucky’. I do not know who I would be if I could walk but I like who I am at the moment.’’
No fear: Azwhayn Skye doesn’t let his condition stop him doing anything. Sky diving and scuba diving are just two of the activities he’s undertaken.
Motoring freedom: Azwhayn Skye says his hand-powered car has given him the freedom to travel around New Zealand.