A four-year-old boy suffers from a condition so rare that it has no name – and the mysterious ailment has left him ‘trapped’ in his own body.
Matthew Chapman, from Lincoln, can only communicate using his eyes – the only part of his body that he can move freely.
Baffled doctors have called his condition SWAN, Syndrome Without A Name, and have warned they may never know what the actual illness is.
They are continuing to test Matthew, who is non-verbal and can only make some noises, for a range of conditions, but are yet to have any success diagnosing him.
His problems began when he was 15 months, as he suddenly forgot how to crawl, before slowly deteriorating until he turned three. Before this, he met all of his milestones.
His parents, who have another 14 month old son called William, are concerned the condition could be genetic and that he may also suffer.
Matthew Chapman, from Lincoln, can only communicate using his eyes – the only part of his body that he can move freely
His heartbroken mother, Victoria, 33, said: ‘Matthew has become one of hundreds of children with conditions so rare, they are just called SWAN.
‘Doctors told us they didn’t know what was wrong with him, and we may never know.
‘I know he is still in there and it’s so hard for me, knowing that he’s trapped in a body that he can’t use.
‘Doctors believe he can still understand everything that’s going on around him and he tries to communicate with his family using just his eyes.’
Victoria and husband Colin, 38, loved watching Matthew meet his milestones after he was born on October 28, 2013 at Lincoln County Hospital.
He was able to roll over, craw, pull himself up and started to say his first words ‘no’ and ‘drink’ before his issues began.
When his problems began
When he reached 15 months, his nursery contacted the couple, saying they had noticed something was wrong with their little boy.
Victoria explained: ‘They said it was like he had forgotten how to crawl and they were worried about his development.
‘He’d been a perfectly healthy baby, so we thought it was just a blip and that he’d be fine. He was our first child, but we knew children all developed at different rates.
‘But, after that, it was as if he was forgetting how to do things. First, he stopped crawling, then his balance and sitting started to go.’
Baffled doctors have called his condition SWAN, Syndrome Without A Name, and have warned they may never know what the actual illness is
Concerned, when he was 20 months old, his parents took Matthew to see a physiotherapist to assess his muscle strength.
Victoria said: ‘She diagnosed Matthew with hypermobility – meaning you can move some or all of your joints more than most people – saying that was probably why he was struggling.
Matthew has become one of hundreds of children with conditions so rare, they are just called SWAN
‘He was quite tall for his age and he was struggling with his joints.’
The couple tried to work on exercises to build up Matthew’s strength again, but despite their best efforts, he continued to deteriorate.
Referred to a neurologist
‘We knew it was something more than hypermobility,’ Victoria said. ‘We were referred to a neurologist over in Nottingham.
‘By that stage, five months pregnant with our second child, we still didn’t think there was anything major wrong.
‘Looking back, I think as parents, there was a little bit of denial and we kept telling ourselves it was just a blip.’
When Matthew was examined by a neurologist for the first time, in April 2016, she told the Chapmans she thought he had a degenerative brain condition, but would need to conduct more tests, including an MRI scan.
They are continuing to test Matthew, who is non-verbal and can only make some noises, for a range of conditions, but are yet to have any luck (pictured with his mother, Victoria, 33)
Believing he could have leukodystrophy, she explained that it was a life-limiting condition, affecting the white matter of the brain.
As it was genetic, it could also affect the baby Victoria was carrying.
‘Our life fell apart’
‘Our life sort of fell apart after that,’ said Victoria. ‘The thought of both our children facing a condition that could destroy their lives was terrible.’
Fortunately, four months later test results ruled out the condition.
WHAT IS SWAN?
Figures suggest that 6,000 children are born in the UK each year with an unnamed syndrome.
They are often genetic conditions that are so rare that it is often impossible for doctors to diagnose.
Such children are told they have SWAN – Syndrome Without A Name, when testing fails to identify a condition.
But the couple’s relief was bittersweet, as this meant they were no nearer to establishing what was actually wrong with Matthew.
And, by the time his little brother, William, was born in Lincoln County Hospital on August 9 2016, Matthew had lost use of every muscle in his body.
Victoria continued: ‘For a while, he could only move his arms, but then he lost that mobility and now he can’t move anything except his eyes.
‘He’s non-verbal, but can make some noises and, at the minute, he can swallow liquids.
‘But our little boy and his amazing personality is still in there. We know he understands us, because he reacts with his eyes and we’re teaching him to use software that he can control with them.
‘Because he couldn’t read or write before this happened, it’s difficult to teach him how to use the eye-tracking device – an electronic computer device screen which monitors eye movements – to speak.
‘However, he’s responding to it well and we think, as he gets older, he’ll be able to use his eyes to select letters and words to communicate with us.’
Doctors are continuing to test Matthew for a variety of conditions and the family have been signed up to the NHS genome project, meaning their blood samples will be continually tested, as more and more things are uncovered.
Sadly, without a diagnosis, they do not know if Matthew’s younger brother will be affected.
His problems began when he was 15 months, as he suddenly forgot how to crawl, before slowly deteriorating until he turned three (pictured before he became ill)
His heartbroken mother, Victoria, 33, said: ‘Matthew has become one of hundreds of children with conditions so rare, they are just called SWAN’
Victoria and husband Colin, 38, loved watching Matthew meet his milestones after he was born on October 28, 2013 at Lincoln County Hospital
Currently 14 months old, they are waiting to see if he develops any symptoms, but doctors are unable to test him for everything – because they simply don’t know what he has.
Victoria said: ‘It is very difficult, watching William meeting his milestones, as Matthew did, and worrying in case the same thing happens.
‘People who don’t know him think Matthew was born like this, but when we explain he wasn’t, they think he’s had an accident. Then we have to tell them that we don’t really have an answer.’
The family are now fundraising to pay for any equipment or support Matthew might need in the future.
Victoria explained: ‘Matthew goes to a special school and there he has access to a standing frame and a hydrotherapy pool.
‘Those things are so helpful. But, at the weekends and during school holidays, he has none of that and not using them every day means he forgets how to do things.
‘Having things at home would help him progress with it faster, but when you have a child with a disability, you quickly realise that everything comes with a high price tag.
‘We don’t know what the future holds for Matthew – he could get better over time, or he could get worse – but we do know that we will do whatever we can to help him. We’ll just take each day at a time.’
He was able to roll over, craw, pull himself up and started to say his first words ‘no’ and ‘drink’ before his issues began
When he reached 15 months, his nursery contacted the couple, saying they had noticed something was wrong with their little boy