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From the jaws of death

Given two years to live, we had to save our son...


Published by: Amy Thompson
Published on: 1st November 2010

When the whole world seems to be conspiring against you, what do you do? Lay down and take it, or fight back, refusing to let anyone tell you something can’t be done?
Right now, I knew exactly which option I was going for.
‘I’m sorry,’ the doctor said again. ‘But your son only has two years to live at the most. There’s no cure for his condition…’
My little boy Jacob, nine, had been acting oddly the entire time we’d been on our 10-day holiday to Turkey with his dad Martyn and little brother Sam, six.
As he’d climbed out of the pool, he’d been walking around like he was drunk, tottering straight past us as if he hadn’t seen us. At first, I thought he’d been larking about –  he was always the cheeky one, playing jokes on people.
But it didn’t take long to realise his behaviour was no joke. As soon as we’d got home, I’d booked an appointment with the doctor.
‘It sounds like he has dyspraxia,’ we were told. ‘It’s a learning difficulty that affects balance and co-ordination. I’ll arrange for him to have an MRI scan at hospital.’
It’d taken three months to get referred there for tests. Now, sitting in front of the doctor with Martyn, I couldn’t believe what I was hearing.
Jacob didn’t have dyspraxia – he’d been diagnosed with a rare brain disease called adrenoleukodystrophy.
‘It leads to progressive brain damage,’ the doctor had explained. ‘The tissue surrounding the nerves in his brain is gradually being destroyed, stopping messages getting to his limbs. He’ll probably be bedridden within six months.’
Then he’d dropped the bombshell – Jacob’s two-year death sentence. As Martyn stared in horror, and Jacob sat between us hearing every word, my blood boiled. How dare anyone tell my boy how long he had left to live!
Some mums might have broken down in tears, accepted what the doctor said. Not me.
‘There’s no way I’ll believe that nothing can be done to save my son,’ I muttered.
The words I’d always told Jacob and Sam as they grew up echoed in my mind – where there’s a will, there’s a way. What kind of mother would I be if I didn’t practise what I preached?
Standing up, I took Jacob’s hand. His eyes were wide and frightened. Then I turned to the doctor and glared.
‘I don’t care what you say,’ I said to him firmly. ‘We’re going to find a cure for this disease and prove you wrong.’
He looked at me, stunned, as I walked out of his office with Martyn and Jacob in tow.
Back at home, we sat our little boy down to give him a pep talk. ‘Things will get tough,’ Martyn told him gently. ‘But we’re going to get you better. We promise we won’t give up if you don’t.’
‘What do you say, Jacob?’ I smiled encouragingly. ‘Ready to prove everybody wrong?’
He nodded happily.
‘Yeah, let’s do it,’ he beamed.
But none of us anticipated just how quickly Jacob’s condition would take hold. Just four weeks later, in November last year, he couldn’t speak properly and couldn’t eat. Soon, he was wheelchair-bound and had to give up school.
Martyn left his job as a plumber to help me look after the boys and, together, we worked tirelessly to find a cure.
Anything suggested by doctors or on the internet, we tried. I read about another mum whose son had adrenoleukodystrophy and had created Lorenzo’s oil – a mix of olive and rapeseed oil. But although it had worked for him and many others, it didn’t for my boy. So we tried low-fat diets, healing techniques.
‘Mummy, is Jacob going to be all right?’ Sam asked me one day, his eyes full of worry. He’d always been a caring little soul.
Seeing how his big brother was deteriorating, Sam did everything to help, fetching toys and helping him to do some puzzles.
‘He’s going to be fine, darling,’ I promised. Not one bit of me believed otherwise.
Just before Christmas, Martyn came across something on the internet.
‘There’s a clinic in Germany that does stem cell treatment,’ he told me. ‘I called about Jacob, and they think they can help.’
The only problem was the treatment had never been done on anyone with Jacob’s condition. There were no guarantees it would work – and it cost £10,000!
Before I knew it, friends and family had hatched dozens of fundraising ideas. Even Jacob’s old school clubbed together to help raise money. Whenever I dropped Sam off, I’d have parents I’d never met coming over and handing me cash donations!
By February, we had enough to take Jacob to the XCell clinic in Germany. We treated it as a holiday, taking Sam along too.
‘There’ll be a few pesky hospital appointments, but nothing we can’t handle, right Jacob?’ I beamed.
He tried to smile back, but his mouth sloped on one side. His face had drooped like he’d had a stroke, and his right hand and foot had tightened into claws.
When we arrived at the clinic, it was full of hi-tech equipment.
‘It looks like something out of Star Trek,’ Martyn teased Jacob. ‘You’re being treated in your own special spaceship.’
Sam giggled and Jacob’s eyes lit up. Poor mite had to have bone marrow removed from his hip. He was given a lumbar puncture, too, so doctors could insert genetically- modified stem cells back into his body. Those cells would then help repair the damaged tissue in his brain… hopefully.
I couldn’t believe how brave Jacob was. When he woke up, I stroked his hair. ‘How are you feeling, sweetheart?’
‘Hungry,’ he croaked. ‘When can I get up?’
Just like us, he wasn’t prepared to take his illness laying down. I was so proud of him.
He stayed in hospital for four hours, but we spent the rest of the week in Germany. Then, in April, he had to return for physiotherapy.
The treatment paid off! After a few months, Jacob’s hand and foot relaxed, and his face returned to normal. He even started learning to walk again and went back to school. A couple of weeks ago…
‘Mum, can I go out on my bike?’ he begged.
‘Your balance isn’t quite right still, but I reckon we can fix that,’ I winked, nudging Martyn.
Stabilisers weren’t quite strong enough, but the Make A Wish foundation was brilliant and helped us get a special tricycle for Jacob.
Almost a year ago, doctors told us Jacob would be bedridden in six months. When we took him back to show how much he’d improved, they couldn’t believe it.
Jacob, 10, has proved everyone wrong, like I knew he would. ‘I’m going to get better aren’t I, Mum?’ he smiled recently.
‘Where there’s a will, there’s a way,’ I beamed back. We can’t be sure what the future holds. Jacob’s due to go back to Germany for another lumpar puncture in November. But to us nothing is impossible and we won’t ever give up.
• To find out more, visit www.smile4jacob.co.uk
April Whitehouse, 40, Bournemouth, Dorset