Blade runner orthotics promise new life for people with neuromuscular disabilities

Daisy Eaglesome dreams of being able to walk without crutches, and run for the bus without feeling silly.

But the Devonport 15-year-old can't feel her left leg from the knee down and it has little muscle tone due to spina bifida, a defect that developed in the womb. Her right leg is better but has needed several operations.

The defect has given her a limp and poor hip alignment. She gets backaches and when she runs "I look like a rhinoceros having a stroke", Daisy said.

Until age 10 Daisy wore a plastic splint on her left leg, funded through the government.

But it couldn't bear her weight.

"I still wanted to climb trees and run and jump. I did cross country all through primary school. But as I got to Years 5 and 6 [the splints] just weren't surviving that."

Right now Daisy can only walk the family dog Tilly for 10 minutes before she gets exhausted, and she has to use crutches. But some day she may be able to throw the crutches away. Photo / Jason Oxenham

Five years ago the Eaglesomes went to Melbourne to try a sophisticated new carbon fibre brace, designed by an orthotist who carefully analysed Daisy's gait and hip alignment.

The lightweight brace has a strut connecting the calf to the foot. It bends then snaps forward as Daisy walks, propelling her in the way an Achilles tendon and calf muscle normally would.

It has made things slightly better but her gait isn't fully corrected.

"Having a good splint helps me walk better and it can also give me more energy because it take less energy to walk," Daisy said.

It took five trips and $50,000, dad Michael Eaglesome said.

"But we're in a really fortunate position where we could just say, 'Let's whack it on the mortgage and go'. How many equally deserving New Zealanders are there who can't do that?"

Orthotists here are passionate and talented but they're stuck with old technology, Eaglesome said. There's little difference between today's plastic splints and the leather ones provided to polio survivors 50 years ago.

But in Australia and the United States, orthotics are made from carbon fibre and carefully fitted to the user.

But they're expensive - costing between $12,000 and $35,000 - and are not publicly funded.

Kiwi orthotics users and their families want to change that.

US orthotic specialist Marmaduke Loke checks Kiwi polio survivor Gordon Jackman's new 'blade runner' orthotics fit and are properly aligned during a New Zealand clinic. Photo / Supplied

Gordon Jackman, 62, who contracted polio as a baby, is chief executive of the Duncan Foundation, a national support service for people with neuromuscular conditions - not just polio - whose survivors, Jackman says, are dying out.

In February, the Duncan Foundation and Polio New Zealand funded the visit of world-leading US orthotist Marmaduke Loke.

Loke makes braces that are even more sophisticated which realign leg and foot bones into the correct position.

He fitted nine people for new carbon fibre braces in February and will be back in May to fit them.

A fundraising campaign is due to start so Loke can cast a new group of orthotics users, including Daisy, during the visit.

Loke has told Daisy he could completely fix her gait with a splint on both legs.

Studies have shown such braces let users walk properly and often live pain-free.

Kiwi polio survivor Gordon Jackman has a new spring in his step after being fitted with carbon fibre orthotics. Supplied photo / Rory Harnden

Jackman has spent his entire life limping in plastic splints. Last year Jackman went to see Loke in the US, shelling out $25,000 for a pair of carbon fibre braces.

Since then Jackman has a new spring in his step. Every day he discovers a new benefit, from the disappearance of his rolling gait to taking up discus throwing after decades away from the sport.

"Polio is forever, you can't change this - I was told that a million times. But actually I have an arch back in my foot, I'm walking like I should. The feeling is great. It's like I have a new body."

Jackman wants the Government to fund the new orthotics, pointing out how much could be saved, with fewer fall injuries and less corrective surgery.
He plans to take a new funding proposal to the Government later this year.

"This is a really good long-term investment."

The Ministry of Health is aware of the new technology.

"As technology improves over time and costs are likely to come down, there may be the ability to consider funding this type of technology in the future," said Toni Atkinson, the ministry's group manager of disability support services.