Moun­tain­bik­ing next on list

Auckland City Harbour News - - NEWS - By MEGHAN LAWRENCE

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.

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