How boy’s death gave parents medical brainwave
By Kirstie Brewer
Diamo Parvez was born with cerebral palsy and died from complications when he was nine years old. During his life his parents were constantly struggling to get him the braces and splints he needed to support his body – and have channelled the pain of their loss into the search for a new, fast way of making them.
Diamo’s arms and legs were paralysed and he had very little control of his head. He needed a back brace, hand splints and ankle splints – technically known as orthoses – to prevent him suffering pain.
The main problem, says his mother, Samiya, is that when a muscle isn’t used it shrinks and tightens.
“Diamo’s muscles were so tight they were pulling his hips out of his joints,” she says. “The orthosis stretches the muscles and helps to hold the body in the right posture, and avoids the need for surgery.”
Getting an orthosis, though, is a drawn-out process, involving different appointments, at different locations. And there is one “horrific” stage, Samiya says, when children have to remain absolutely still for up to an hour as a plaster of Paris mould is made of their body.
Samiya and Diamo’s father, Naveed, would often have to resort to restraining their son to keep him from moving.
“We saw how much our son hated being pinned down for the plaster – he would scream and scream and it was a real struggle,” says Samiya.
“I know kids who break down and start crying if their parents even drive past a hospital because they think they’re going to get a plaster cast.”
Next comes a wait for the brace to be created from the mould – and then a trial-and-error process of fitting and refitting.
“Sometimes it would be ever so slightly out and cause him to have sores and bruising so we’d have to start again and hope to keep him still enough for the mould to be accurate,” Samiya says.
The whole process could take as long as six months – by which point Diamo had inevitably grown. Throughout his life, Diamo would go through the casting process at least eight times per year his parents say. And that was just for the back brace.
Without a back brace, Diamo would slip out of his wheelchair, so there were periods between outgrowing the old one and a getting a new one when he would be unable to go to school.
“For a good three weeks we were housebound as a family because we couldn’t put him in the wheelchair to be able to go out,” says Samiya.
She even knows of children who can walk but have had to use a wheelchair while waiting for a new orthosis.
Diamo died five years ago this month. Less than a year later, Naveed attended a tech conference and saw someone making 3D scans of old steam trains in order to reproduce parts with a 3D printer.
“The new parts were so accurate that the scratches in the paintwork of the original were perfectly reflected in the print,” he says. He began to think about how that technology could translate into making orthoses.
“I had a lightbulb moment – not just because of the technology but because of the realisation that all that pain could be turned to good,” he says.
“We were grieving – we still are – but then it was very raw and I thought that this is something Diamo could leave behind.”
Within a year they’d created a prototype and with help from a charity, the Nominet Trust, they set up a health technology company, Andiamo.
Andiamo does not use plaster casts. Instead, a 3D scanner is swept over the child’s body for between 60 and 90 seconds. Inside the scanner a number of high-speed cameras take photographs from different angles and these images are then digitally stitched together to make a 3D image, which can be fed into a 3D printer.
“These children are already stressed and in pain, coming to appointments is never fun – but we have been able to turn some of that experience around and get the children excited about the 3D printing,” says Samiya.
And the aim is to reduce waiting times from months to 48 hours. So far they’ve got it down to two weeks.
“We could have avoided so much pain in our lives if that technology had been available to us,” says Samiya.
The high-accuracy scanning system produces orthoses that are a better fit, and this combined with the use of lighter, stronger materials results in a finished product that is less bulky and less than half the weight of traditional orthoses, Naveed says.
Fourteen-year-old Sahara – one of Andiamo’s first clients – can attest to this. She has cerebral palsy which affects all four limbs but can stand up and bear down on her feet with some support. From the age of two she has worn ankle-foot orthoses – known as AFOs – to hold her ankle in the right position and keep her controlled and grounded when she stands.
The Andiamo AFO “feels great, very lightweight”, she says, compared with her old one, which now feels “thick and heavy” by comparison. Lifting her feet is now easier – and as a result it’s also easier for her to keep her balance.
Who uses orthoses?
Orthoses can be used by people with a range of conditions, says Samiya, to relieve pain, increase mobility and to help protect tissue while it heals
They can also be used to help people support their limbs after a car accident, or chemotherapy.
Chronic obesity can also lead to musculoskeletal problems
“People need orthosis after cancer care, obesity and diabetes – all of which are on the rise – but the capacity to serve them is shrinking,” Samiya says
Sahara’s mum, Salome, used to take the old AFO out with her when shopping for shoes, to see which would be big enough to accommodate its cumbersome shape.
“Children with traditional AFOs have that Frankenstein appearance – skinny legs with massive feet because they’re made to be very big and bulky with extra room for the foot to grow,” she says.
This is another problem Andiamo may help to fix.
Since seeing its first patient in December 2014, the Andiamo team has been working with 16 patients to develop the technology, and is now ready to see more.
“We have been focusing on ensuring the devices fit, are comfortable, and have a level of quality we are happy with,” says Naveed.
“It is easy to do a one-off. It is much harder to have a consistent approach that allows you to scale.”
The plan is to see at least 100 patients in 2017, to make more than 40,000 orthoses over the next five years, and to open a permanent clinic in London after a crowdfunding campaign in the near future.
Orthoses make a big improvement to the wearer’s quality of life, Naveed says, “but they aren’t sexy, they don’t make a lot of money and they don’t come with huge research and development budgets so they’ve been overlooked.”
The extra accuracy of the orthoses should also result in less time being wasted by patients and medical staff at appointments.
The British Association of Prosthetists and Orthotists estimates there are only 450 qualified orthotists in the UK
It is an ageing profession, NHS England says, and many orthotists will retire with no-one to take their place
At the same time, demand is rising by 6% each year, says Samiya
This is partly because patients are now surviving conditions and trauma that would have killed them in the past, says Naveed
Five years after his death, Diamo remains sorely missed.
“He was a happy, very relaxed kid who would only cry when he was in real pain,” says his mother. “He really enjoyed food and especially loved dark chocolate mousse.”
Another passion was the music of James Blunt, which came about after the chance discovery by his carer, Carolina, that it would instantly relax him.
“It was painful,” Samiya says. “Why did it have to be James Blunt? I even had to suffer through one of his concerts!”
“People make real assumptions about children with a disability” says Naveed, “but they get obsessed with stuff, just like other kids do. In Diamo’s case, it was James Blunt.”
Andiamo, which means “let’s go” in Italian, is named after him.
“Although I don’t have the same pain any more,” says Naveed, “if we can reduce another family’s and make life a bit better for someone else, it’s worth it.”