Family hopes to crowd-fund medical trial of cerebral palsy therapy with Kokoda Track mission – ABC Online

Updated August 14, 2017 17:31:02

How far could you carry a six-year-old?

To the park? To the shops? What about along the entire Kokoda Track?

Michael Shearman is going to do just that. His son Max weighs 27 kilograms. The Kokoda Track stretches 96 exhausting kilometres.

So why would Michael carry Max that far?

Max was diagnosed with cerebral palsy when he was an infant.

It's a brain disorder that affects about 34,000 Australians. Symptoms range from physical weakness in one limb through to an almost complete lack of voluntary movement.

The diagnosis was devastating for Max's parents, Michael and Claire.

"I remember just that breathlessness of going, 'What does this mean?' first," Claire tells 7.30.

"They were talking wheelchairs. They didn't know if he'd be able to talk, how his brain was going to be functioning and what the outcomes were going to be."

The Shearmans explored therapies and treatments to try to improve Max's mobility and muscle development, ranging from botox and bobath therapy to physiotherapy and yoga.

They say there were breakthroughs from time to time, but nothing seemed to provide a lasting improvement.

Then they came across the TheraSuit.

"There was a program on one of the TV shows that we watched," Michael says. "And it showed TheraSuit and what TheraSuit is.

"We asked a few therapists about TheraSuit and they said, 'Oh no, we haven't got that in Australia, no therapists are trained in that in Australia'."

But the Shearmans kept looking, and when a therapist they knew decided to train in TheraSuit therapy and offered to take Max on as a patient, they jumped at the opportunity.

"There are a lot of conflicting opinions," Claire says. "A lot of people who didn't know much about it said: 'Look, it's just another gimmick, it is a waste of time, it's a waste of money'.

"We had tried so many different things it was just again a bit of trial and error and going, 'OK, well we'll give it a go and see. Everything is worth a try'."

The TheraSuit has its origins in a space suit created for the Russian cosmonaut program. It functions by constricting muscles and applying pressure to the body to build up muscle strength.

It's used as a cerebral palsy treatment in dozens of countries around the world, but isn't widely used in Australia and doesn't attract government funding subsidies.

Several studies of the TheraSuit overseas returned underwhelming findings.

A 2011 study concluded: "Children wearing the TheraSuit during an intensive therapy program did not demonstrate improved motor function compared with those wearing a control suit during the same program."

A study published in July 2017 noted: "Enthusiasm with new therapeutic approaches needs to be guided by scientific evaluation. The low quality of evidence suggests caution in recommending the use of these therapeutic suits. New studies could change the findings of this review."

Despite the findings of these studies, the Shearmans are adamant the TheraSuit has opened up a new world of mobility for Max.

"I was really sceptical at the start, as with all sorts of therapies that I have been sceptical of, because I have never seen any easy fix," Michael says.

"When they put the suit on they can activate certain muscles just by tightening bungees and tightening elastic cords on the suit that holds it together. They go through a whole exercise program with those muscles activated.

"It helps retrain the brain as well as the muscles, you know, to reignite pathways within your brain.

"Max is a completely different boy to how he was since he has done the TheraSuit.

"He is riding a bike. He's walking. And he surfs now. I can push him on the waves and he can trim himself along and paddle in."

"All over, there are lots of functional things that he has gained," Claire says. "But it's really the strength. He's so muscly now, whereas he used to be such a little whippet."

Max's TheraSuit therapist, Zoe Planck, says he has made significant advances.

"The whole point of intensive therapy is to see accelerated functional outcomes in comparison to traditional therapy methods," Ms Planck said.

"So for Max, a huge goal for him was to strengthen his body enough that he could stand independently. But now he is strong enough that he is taking independent steps.

"And then not only that, he has got so much more strength in his body that the left arm that is affected [by cerebral palsy] is now so much more functional in daily life, using it to help him dress, to eat, to play."

But the TheraSuit doesn't come cheaply. The Shearmans say they spent $30,000 last year on the therapy.

They managed to afford it, but know many families simply can't.

"I wanted to start campaigning to help other kids get access to this therapy," Michael says. "So I thought, 'We need to fund a trial'.

"I have got to raise $450,000, I have got to put 15 kids through this intensive program in 2018 and I am going to have it reviewed properly."

The Shearmans have joined forces with researchers at Monash University's Hudson Institute of Medical Research to start designing a trial to run next year.

"Just because it works in Max, doesn't mean it's going to work in every kid with cerebral palsy," associate professor Tim Moss from the Hudson Institute tells 7.30.

"We need to start off with a well-defined group of children whose cerebral palsy we can quantify and measure before and after the treatment.

"If we know it works in that sort of context then we'd be justified going further and trialling it in kids with perhaps more-severe or less-severe cerebral palsy.

"This is one therapy that hasn't been properly studied.

"There's no adverse effects of the therapy, but there has not been an ability yet to show benefit from those treatments. But of course lack of evidence is not equal to evidence of a lack of effect."

Michael Shearman is confident the trial he is trying to fund will show great results.

"Once we can prove that this intensive therapy does work, if we can put that to the Government, maybe other kids can grab hold of this therapy."

With a huge fundraising task ahead of him, Michael decided to do something outrageous.

He hatched a plan to carry Max along Papua New Guinea's notorious Kokoda Track on an eight-day mission to raise awareness and as much money as he could to fund the trial.

The past few months have been a whirlwind of fundraising, travel planning, immunisations and discussions with Max's doctors and a lot of practice walks.

As a serving police officer Michael is pretty fit. But even he's a little intimidated by the prospect of carrying Max for days along the Kokoda track.

"He's just under 27 kilos now. The little bugger has put on a little bit more weight since I decided to go, four kilos I think he has put on," Mick laughs.

Michael and Max fly out for Papua New Guinea this week, with a support team of friends and family alongside them.

Max says he can't wait to go swimming in rivers and visit village schools in Papua New Guinea.

"We obviously went through all the checks with the paediatrician and got all the health checks," Claire says.

"There is a paramedic going on the trip, which is very nice for me.

"I don't doubt Michael for a second. He has got the strength and fitness and the mental strength to do it. But having Max on his back is something else. I'll be really happy when they get back."

Michael says the Kokoda trip will be a powerful bonding experience for him and Max.

"As father and son we'll be rock solid after this, without a doubt.

"Max is told every day he can be anything, he can do absolutely anything you want. And I want him to know that.

"I hope, and obviously I dream, about Max being able to be fully independent.

"To drive a car, have a job, raise a family of his own, help other people that are similar to him and proving that cerebral palsy isn't a life sentence.

"Yes you've got it for life, but it is not a sentence."

Topics:cerebral-palsy,melbourne-3000

First posted August 14, 2017 14:07:24

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Family hopes to crowd-fund medical trial of cerebral palsy therapy with Kokoda Track mission - ABC Online