How a cruel disease is paralysing a little boy - and no one knows what it is or if it will kill him

The holiday photos show a beautiful blond boy trotting along the beach, kicking a football determinedly and giggling with his daddy.

But Lewis Jeynes's mum, Samantha, admits she never looks at these snaps - taken in France in September 2005 - it's simply too painful.

For her boy is now trapped in a body that doesn't work. The once-lively and active four-year-old can no longer talk, eat, move his limbs or even support his own head.
And, heartbreakingly, his large brown eyes are still filled with intelligent curiosity, a constant reminder of the old Lewis, a toddler whose energy promised so much.

'It hurts too much to look at those photos now. He's never going to run, kick a ball or make sand castles again - not without a miracle,' says Samantha, 39, cradling Lewis in her arms.

What makes their story even more tragic is that doctors have no idea what is wrong.

Indeed, Lewis's condition has continued to baffle a succession of medical experts.

He's had hundreds of blood tests, biopsies, MRI scans, a lumbar puncture, allergy tests - and all have come back absolutely clear.

'On paper, Lewis is perfectly healthy,' says Samantha, who's given up her clerical business in order to be Lewis's full-time carer at home in Doncaster.

'No one can explain why this has happened to him.

'Until recently, I used to feel full of anger. Why us? Why has this happened to my boy?

'Now we just live day by day and treasure the highlights, such as when he gives us one of his gorgeous smiles.'

For the first two years of his life, Lewis passed every developmental milestone.

He sat up at six months, started to crawl at nine months, and was walking at 17 months, trotting after his older brother Sam, now 15, from Samantha's first marriage.
Lewis started to limp

Just before his second birthday in February 2006, Lewis started to limp on his right leg.

'His leg was X-rayed but they could see nothing, so assured us it was just an "irritable hip" - when the tissue around the hip bone becomes inflamed - and that it was quite common in boys of Lewis's age. A week's rest cleared it up.'

But two months later, in April, Lewis started limping again on the same leg.

'At first, our GP thought it was a return of the irritable hip but a few days later he couldn't take any weight on his right leg.

'Instead of walking, Lewis reverted to crawling everywhere, which was worrying.

'But I never thought it was anything serious - in every other way, he was his usual self.'

Lewis's family saw a paediatric neurologist at Sheffield Children's Hospital a week later. An MRI brain scan, blood and urine tests all came back normal.

'It was so frustrating,' says Samantha. 'Why couldn't he run around like other boys his age as he'd been doing just months before?'

Then in July 2006, Lewis suffered a seizure. An MRI scan and tests to diagnose epilepsy showed slight abnormalities in the brain, but nothing conclusive.

'The scan showed his brain function was totally normal.

'We left hospital with totally mixed emotions - relieved we hadn't been given a frightening diagnosis, but anxious that no one knew what was wrong.'

With the couple due to get married the next day, it was a fraught time.

'We'd been planning the wedding for two years and the original plan was for Lewis to be a page boy.

'He looked adorable in his suit, but while the other children ran around, he was crawling on the carpet,' says Samantha.

On their honeymoon in Spain, Lewis wasn't himself either.

'Lewis had started swinging his hips, as if his joints were sore, and he seemed tired all the time.'
His body started to shut down

From then on, Lewis's body started to shut down.

His left hand clenched up permanently in a fist so he couldn't use it.

He stopped crawling and lost neck movement, so much so his head had to be propped up with cushions. Then he lost movement in his right arm.

By Christmas, he was having trouble swallowing, choking on pureed food.

'That was the most terrifying time - watching our beautiful baby's body shut down - and feeling utterly powerless,' says Samantha.

'We were stuck in a never-ending round of hospital consultations and social services appointments for help with our now severely disabled son.'

Samantha and James's family videos are heart-breaking; instead of recording the joyful steps of childhood, they realised they were recording the last times their son could to do things independently.

'There's one video where Lewis is struggling to eat a yogurt in his high chair.

'His left hand can't hold the pot so he's trying to do it one-handed, and he keeps trying and trying', says Samantha tearfully.

Throughout this time, Lewis was in and out of hospital for more tests and intensive physiotherapy sessions to try to strengthen his degenerating muscles.

'He hates the needles in blood tests but he's so brave,' says Samantha. 'He even received a WellChild Bravery Award from Prince Harry last year.'

In November, he had a lumbar puncture to test a sample of fluid from his spinal column for rare neurometabolic diseases and progressive neurological disorders.

The seriousness of these tests, coupled with Lewis's deterioration, terrified his parents.

'Until you have a child who's sick, you can never imagine the emotional roller-coaster of hope and terror, and then hope again,' says Samantha.

To their relief, the initial results from the lumbar puncture tests came back negative.

The next stage was skin and muscle biopsies to test for Batten Disease, a rare metabolic condition.
Skin and bones

Just days after Christmas, Lewis stopped being able to swallow. He choked on teaspoons of food and in six days had lost 3lb, dramatic for a child weighing just 1 1/2st.

'He was skin and bones,' says Samantha. 'That's when he started being tube fed. It was a bleak time.'

Three weeks later, Lewis came home and his parents started making plans for the long-term care of their son.

Now constantly tube fed and unable to support his head, Lewis was more dependent on them than a newborn.

'It was such a huge responsibility to get used to giving him his tube feeds and his medication to control his seizures,' says Samantha.

'I was constantly worrying, not sleeping because I was so scared that he wasn't going to wake up. I still sleep with him every night.'

Lewis's condition seemed to have stabilised, but the cause of his illness remained a mystery.

In April 2007, the family travelled to Great Ormond Street Hospital in London to see the world expert in neurological metabolic diseases, Professor Robert Surtees.

'He suggested a nerve biopsy for rare genetic disorders, but they all came back normal,' says Samantha.

'We were so hopeful because he was presented to us as the God of neurology and then he died suddenly in August.

'It was as if all our hopes of finding a cause and perhaps even a cure had died, too.'

Lewis's paediatric neurologist at Sheffield Children's Hospital describes his condition as a 'progressive neurological condition now in a static phase', meaning it's not getting better or worse.

'I've been told that no diagnosis would fit all Lewis's symptoms, something occasionally seen in children with neurological disorders.'
Round-the-clock care

So without a firm diagnosis, Lewis's family have had no choice but to settle into a routine of round-the-clock care.

Thankfully, Lewis's mystery condition appears to have stabilised, but he still needs weekly physiotherapy and hydrotherapy to try to increase what little movement he has.

Since last July, he has been fed through a tube straight into his stomach, with each feed taking up to six hours.

When Lewis isn't suffering from the chest infections he's prone to, he attends a special school in Doncaster during term times.

'It was really hard for me at first,' admits Samantha.

'I used to sit in the parents' room, worried sick that he wouldn't be looked after properly and would miss me.

'Now I've learnt to relax and I'll go to the supermarket or for a run.'

While Samantha is Lewis's devoted carer, the family have put all their effort into raising funds for Lewis and other children with undiagnosed neurologically degenerative conditions.

Their new goal is to raise the enormous sum of £19,000 for a computer - a Smartbox MyTobii - which Lewis can control with eye movements, allowing him to communicate for the first time.

'They've just had one installed at Lewis's school and it's amazing,' says Samantha excitedly.

'The computer is like a key for Lewis, a key that will unlock a more rewarding and fulfilling life.

'Soon he'll be able to use it to learn to read and to talk to us.

'When Lewis was a baby, he was so perfect, I never ever thought something so terrible as this could happen to him,' says Samantha.

'Thank God, he's still with us and bright as a button, but it hurts to see him trapped in his body like this. And with absolutely no explanation as to why.'

So for now his family have learnt to treasure the precious moments Lewis gives them.

'He loves being "whooshed" in his wheelchair towards someone in front of him,' says Samantha.

'He loves it so much he sometimes almost laughs. That's a great sound, Lewis almost laughing.

'It rips at your heart and brings tears to your eyes.'