Lake rider's got his nephew behind him

Photo: AMELIA JACOBSEN

TEAM DUCHENNE: Ian Power is cycling 160km around Lake Taupo tomorrow to raise money for his seven-year-old nephew who was diagnosed with muscular dystrophy last year.

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Ian Power will appreciate the use of his legs tomorrow when he's cycling 160km around Lake Taupo.

He's riding the Lake Taupo Cycle Challenge to raise money for his young nephew, who will never be able to take part in such an event.

"It seems appropriate to suffer the physical and painful exhaustion since he can't experience it. It shows that if you can do this event, you are lucky," Mr Power says.

Seven-year-old Brennan Massey was diagnosed with duchenne muscular dystrophy last year.

The rare disease, which is caused by a spontaneous gene mutation, kills muscle cells and replaces them with other tissue.

Brennan is gradually having to slow down.

"He's finding it difficult to walk and he can't run," Mr Power says.

The Glendowie resident believes Brennan could be in a wheelchair by the time he is 10, meaning a costly renovation for Brennan's family home in Mangawhai.

There is no cure or treatment for duchenne muscular dystrophy and life expectancy ranges between early teens to early 30s.

"It's incredibly hard on his parents. He's a bright boy, very smart and clever. He's a delight," Mr Power says.

After hearing the diagnosis, close family immediately got together.

"We sat down and tried to figure out what we could do to help," Mr Power says.

Riding the Lake Taupo Cycle Challenge to raise money for the Muscular Dystrophy Northern charity was just one way he could support Brennan and his family.

Mr Power is riding with friend Hugh Griffin in matching Team Duchenne lycra.

Brennan's smiling face has been printed on the back of their jerseys to remind them why they are there.

Muscular Dystrophy Northern has helped Brennan's family deal with the situation by sending a field worker to visit them in Mangawhai. The organisation relies on fundraising.

"They don't get funding from the government. That's the problem with a low-profile disease, the support isn't there," Mr Power says.

Team Duchenne set out to raise $2500 for muscular dystrophy and have been overwhelmed with the response. Earlier this week they had already collected more than $4000 and donations were still rolling in.

"He knows he has it, he knows his muscles will get weaker. Brennan doesn't like a lot of attention or fuss. He would prefer to just slip quietly by," Mr Power says.

Brennan, with his parents, will be at the start and finish lines tomorrow cheering his uncle Ian on in the Lake Taupo Cycle Challenge.

Mr Power says the race is daunting and he just wants to "get it over".

"I just need to survive, I don't care about the time."

Team Duchenne is still accepting donations for Brennan and muscular dystrophy. To donate go to www.fundraiseonline.co.nz/teamduchenne.

- © Fairfax NZ News