New 3D Technology for Washington Families living with Cerebral Palsy
Diamo Parvez was born with cerebral palsy and passed away from complications when he was nine years old. During his life his parents were constantly struggling to get him the braces and supports he needed to support his body. They have channelled the pain of their loss into building a better way to make them and provide care to all families living with Cerebral Palsy.
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 braces - 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 brace stretches the muscles and helps to hold the body in the right posture, and avoids the need for surgery."
Getting a brace, though, is a drawn-out process, involving different appointments, at different locations. For spinal braces 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 and often it never fits.”
"Sometimes there could be half an inch of space and this poor fitting would 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 new braces.
Diamo passed away 9 years ago this year. 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.
Within a year they'd created a prototype and with help from crowdfunding they set up a health technology company, Andiamo. Andiamo, is named after Diamo and also means "let's go" in Italian.
Andiamo does not use plaster casts. Instead, an iphone is swept over a special sock covering the child's leg for between 60 and 90 seconds.The brace therapist then uploads the scan onto Andiamo’s AI led digital platform, Avanti, before entering the brace prescription.
"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 3D printing and the benefits of these new technologies" 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 Avanti platform produces ankle braces that are a better fit, and combined with the use of lighter, stronger materials results in a finished product that is less bulky, thinner and less than half the weight of traditional braces. This leads to improved stability, improved balance and improved confidence for the children.” 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 braces - 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.
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 ankle braces 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 helps to fix.
Since seeing its first patient in December 2014, the Andiamo team has seen thousands of families across Europe and Middle East to develop the technology, and has chosen the state of Washington to launch in North America.
Naveed explains that the state of Washington is one of the key centers in the world for cerebral palsy research, clinical innovation and education. “Its little known locally, but Seattle Childrens Hospital and UW are world famous for Cerebral Palsy with a number of innovations being invented here over the last 50 years. It also has a brilliant base of knowledgeable therapists that we can build digital services for.”
Families can be seen by Andiamo therapists at a number of locations close to Seattle. For all enquiries please call +888 868 0868 or email firstname.lastname@example.org
Andiamo offers a value-based digital health platform that provides personalized, clinically coordinated care for families living with cerebral palsy. Andiamo pairs human guidance, software and analytics to quickly connect families to the right care, and provide ongoing support through targeted, evidence-based interventions. They integrate with a health plan’s and children’s hospital provider’s existing infrastructure leading to better outcomes and lower costs.
Andiamo partners with health plans and providers to extend the reach of high-quality cerebral palsy care through flexible value-based payment arrangements, including risk-based programs. The total medical reimbursement costs for Cerebral Palsy, in the US alone, are over $58Bn per year, with Andiamo building the engine that will serve other complex conditions within the fast-growing global trillion-dollar disability market.