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Newcastle Herald
Newcastle Herald
Health
Damon Cronshaw

Harley's fight for life: 'I was told I'd be lucky to live through my 20s'

Harley Muir is fundraising for stem cell therapy to treat muscular dystrophy. Picture by Peter Lorimer

Gateshead's Harley Muir dreams of trying a stem cell transplant that he hopes will improve and extend his life.

Harley was diagnosed with muscular dystrophy at age 11.

"When I was about 15, I had to go into a wheelchair," Harley said.

"I was pretty much told I'd be lucky to live through my 20s."

Now 37, his hopes of further extending his life were raised after listening to a podcast about the Stem Cell Institute in Panama.

"Mel Gibson was a guest, saying his dad went through some successful treatment," Harley said.

"In the middle of the podcast, they said they'd had promising results for muscular dystrophy."

His support worker and a friend suggested he try a GoFundMe to raise the $180,000 needed for the treatment.

"I don't like asking for help, but I figure it's the only way it's going to happen so I might as well embrace it."

The fundraiser, titled Help Harley Heal, said "living with muscular dystrophy has made daily life increasingly difficult".

Harley, a single dad, faced "significant limitations in mobility and independence".

He hoped the treatment could give him the strength to be more active and engaged with his four children.

While he can move his arms, he can't lift them.

"I use one hand as leverage to lift the other one up," he said.

Research showed stem cell treatment could improve arm function in patients with muscular dystrophy, along with standing, balance and respiratory function.

It could also repair and regenerate muscle fibres, decreasing the disease's rate of progression.

Mr Muir said he was "a driven person", who was "gifted with tremendous patience".

"I'm very positive and motivated when I want to accomplish something."

Despite his disability, he has started two businesses.

One aims to mass produce fruit and vegetable seedlings.

"The idea is to sell in bulk to plant nurseries. I can produce 900 seedlings a week in my kitchen," he said.

Harley's 18-year-old son does the physical labour.

"He does a great job too. He likes to call himself the humble head gardener."

Harley recently started another business that aimed to help people with a disability receive fair access to sex workers.

During his early experience at brothels, he "felt like there was a little bit of discrimination there".

"The girls weren't too happy to see the guy in the wheelchair basically. Only one out of five was keen," he said.

"Then I started to get a bit of experience. I'm a pretty open person and a good communicator, so I talk to women and figure out 'what's the problem, what are you afraid of?'.

"A lot of the time, it's just the unknown."

He didn't have the confidence to approach women when he was younger.

"My experience with sex workers gave me the chance to talk to women and that's where I was able to gain confidence," he said.

"It's a basic human right to lead a fulfilling sex life and have relationships."

His service, which could be claimed through the NDIS, was to "sit with the client and gather information about what their support needs might be around the booking".

He then finds a sex worker for the client and briefs them.

"Nine times out of 10, if they're given the right information, the sex workers are happy to see anyone."

The NDIS had previously covered the cost of sex workers for some people with a disability.

The federal government cut that option this year under reforms to rein in costs.

In any case, Mr Muir said there had been "a tonne of hoops to jump through" to get NDIS funding for sex workers.

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