Dad always thought there was a cure out there
As doctors miraculously help paralysed patients to walk again, Christopher Reeve’s son reveals how proud his family are to have played a key part
AFEW weeks ago, 29-yearold Jered Chinnock made world headlines when he took his first steps in five years after being paralysed from the waist down in a snowmobile accident.
It was a moment that will go down in medical history: the young American, who might once have been expected to spend the rest of his life in a wheelchair, walked more than 100 metres with the aid of a wheeled walking frame.
Jered had undergone a pioneering treatment called epidural stimulation, where electrodes are surgically attached to the lower part of the spinal cord to ‘reconnect’ nerve cells to his brain.
He also underwent intense rehabilitation exercise to reactivate his nerves and muscles. As a result, he can now, by thinking about moving, actually do so when he is wearing the implant.
Thousands of miles away, in Sweden, one man was taking particular interest in the news. Matthew Reeve is the eldest son of the actor Christopher Reeve, who, at the age of 42, was left paralysed from the neck down after a horse-riding accident in 1995.
Matthew says his father, who died in 2004, would have been ‘ecstatic’ about the latest breakthrough.
‘When he was injured, he was told: “This is your wheelchair. Get used to it. You will not recover any mobility”. Nobody who is injured today should be told that because it’s not true,’ says Matthew emphatically.
‘Back then, a cure for spinal injury wasn’t thought to be a possibility but my father had great hope and worked relentlessly to raise money for research.
‘He had such belief and would say: “We want to find a cure: let’s get it done”,’ says Matthew.
The actor’s efforts led to what became the Christopher and Dana Reeve Foundation, dedicated to funding research into curing spinal cord injury and improving the quality of life of people living with paralysis.
In fact, the centre where Jered received his treatment, the Mayo Clinic in Minnesota, is one of three where research into spinal cord injury and the seminal work on epidural stimulation has been part-funded by the Christopher and Dana Reeve Foundation.
MATTHEW, along with his two siblings, works part-time for the Foundation. ‘A couple of years ago we made an announcement about our first four guys who were able to stand up,’ says Matthew, now 38, a screenwriter and vice-chairman of the Foundation.
‘This year, other patients of ours have been able to take steps, which is a truly remarkable watershed moment.
‘It’s difficult for me not to get emotional when I see or hear about patients standing up out of their wheelchairs and taking steps. One of the earliest guys to receive epidural stimulation stood up to get married.’
Matthew, speaking exclusively to the Mail from Stockholm, where he lives with his partner and their twoyear-old daughter, adds: ‘I believe it is only a matter of years before innovative, technology-based therapies like epidural stimulation will become standard practice in the treatment and recovery from spinal cord injuries — and that patients like my father will walk again.’
Matthew was 15 and living in London with his mother, Christopher’s former long-term partner Gae Exton, and his younger sister Alexandra when Dana, Christopher’s wife, rang to tell them about his father’s accident.
‘We knew his life was in the balance and flew over immediately,’ Matthew recalls. ‘His level of injury was one of the most severe, at C1 and C2, the highest two vertebrae in the neck. He was a quadriplegic, had to be ventilated and needed 24-hour care.’
After the accident, he also endured many potentially lifethreatening health problems.
‘One drug sent him into anaphylactic shock. He flatlined three or four times,’ says Matthew.
He also had attacks of autonomic dysreflexia, where some stimulus below the level of injury, such as bladder or bowel issues, or even tight clothing, causes the autonomic nervous system to become overactive and blood pressure shoots up.
‘My father had a brief moment of depression at first, taking it hard because he was such an active guy,’ recalls Matthew. ‘Yet he chose to embrace what had happened, to put a face to a whole field of research and a community that didn’t really have a public voice, bringing awareness to the daily struggles they endure.
‘If he was feeling down, he got through it as quickly as possible.
‘He wanted to continue to be there as a husband and father. My youngest brother Will was three at the time of the accident and Dad taught him to ride a bike just by giving him instructions.’
His father, says Matthew, ‘kept himself very well informed about the research — we would hear about it over dinner or in the sitting room.
‘It would have surprised him that technology is playing such a pivotal role in spinal cord injury research — back then it was presumed that any solution would be biochemical. My father talked a lot about stem cells.’
The hope was that stem cells might one day help repair a damaged spinal cord.
The Foundation has invested nearly £110 million in research over the years, and epidural stimulation is the chief focus.
Matthew explains: ‘For now we will continue to fund electrical stimulation, as the results are truly astonishing and leading to a lot of thinking about how the spinal cord works.’
Last month another group of researchers, based in Switzerland, published a paper in the journal Nature revealing that the same technology had allowed patients to walk about half a mile when the implant was turned on.
They also found something unexpected: the treatment was helping damaged nerves in the spine to regrow.
‘We’re learning that the spinal cord is not just a simple “telephone wire” that carries signals from the brain to the body but is smart and capable of learning — or relearning,’ says Matthew.
With the benefit of hindsight, the family now believe that Christopher, too, benefited from this.
He insisted from the outset that physical activity was essential for those with spinal cord injuries.
‘He wanted to have his body ready for when a cure came along,’ says Matthew.
‘He had a fixed bike and three times a week he would get on that. He had a physical therapist and a nurse would apply electrodes to his leg muscles so he could cycle.’
THIS ‘functional electrical stimulation’ caused his leg muscles to contract in a pedalling motion. ‘He also used a pool. It needed an army of helpers, with his ventilator attached to a long extension tube,’ says Matthew.
‘He actually regained a little bit of movement through doing his exercise, beginning from five years after the accident. He was able to move his index finger, his arm a little and sense touch — and there was one pool session where he moved his leg a bit.’
An MRI scan years later suggested at least part of the explanation. It showed Christopher had an incomplete injury,
meaning the brain may still be able to send signals below the point of injury, rather than a complete injury, where the cord is fully compressed or severed, as was previously thought.
‘There was only a small channel of nerves but the spinal cord wasn’t severed,’ says Matthew. This raised the hope, tragically not realised in Christopher’s case, that there could be some improvement.
The Foundation also funds non-techrelated research, for instance its trial into riluzole, a drug thought to repair damage in the aftermath of acute spinal cord injury and delay the need to use a ventilator.
in 2004, just ten days after Christopher’s death, his vision for a chain of rehabilitation centres using the latest scientific developments came to fruition with the establishment of the neuro recovery network (nrn). The organisation is also now linked to a rehab centre at Crawley, near Gatwick airport.
‘When someone sustains a spinal cord injury, it’s not just the disability that’s the problem,’ says Matthew. ‘There’s a whole host of secondary complications: everything from loss of bladder and bowel control and body temperature regulation to blood pressure issues, pressure sores and sexual dysfunction.’
data collected at the 15 nrn centres shows that staying active can improve respiratory and cardiovascular function.
‘The guys in our research studies who have done this in combination with epidural stimulation have regained control of these secondary complications and it has vastly changed the quality of their lives.
‘now we want to run studies using activity-based therapy and electrical stimulation on more diverse groups of patients.
ultimately, the goal is to have a standardised programme, he says.
‘every injury is different, every patient has a different medical and physical history, so there won’t be a one-size-fitsall cure. What will be defined as a cure will be a bespoke solution, and stem cells for some individuals may be part of it.
‘For some people, the activity-based therapy that precedes electrical stimulation might on its own lead to a recovery of mobility and enough function to be able to stand up and work.’
Fourteen years after his father’s death from sepsis, following an allergic reaction to an antibiotic, he remains a towering figure in Matthew’s life.
‘it’s an honour to continue the work my father began,’ he says.
‘he was allergic to horses but, playing Count Vronsky in anna Karenina in 1985, he felt a professional responsibility to learn to ride. he never regretted it.
‘he remained a magnetic, larger-than-life figure. he was charming and funny and socially active. he also never took a day off fighting for more research dollars.
‘‘People said he really was superman but he emphasised that the ability to endure, the power to love, everyone has that.’