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Santa, please give us new legs

There was just one thing my kids wanted for Xmas


Published by: Laura Hinton
Published on: 22 December 2011

My six-year-old twins Ellie and Laurie were sitting giggling at one of the Christmas films on TV.
‘You'd better write a letter to Santa soon,' I reminded them. ‘Else he might forget you want some presents this year...'
‘No!' they both yelled back, horror on their faces.
‘So what are you after then?' I teased them.
‘I want a DS,' Laurie said. ‘And some new legs.'
He looked across at his sister and, for a moment, they both looked sad. They were both sitting in their wheelchairs - and of course, new legs were the one thing Santa couldn't bring them.
‘I want to skip like my friends,' Ellie continued.
Her words broke my heart, but I plastered a smile on my face.
‘You'd better write it all down then,' I chirped. As I watched them scribble away, I felt so terrible. I could never get them what they really wanted for Christmas...
They'd been born nine and a half weeks premature on Boxing Day, and weighed just over 3lb each. But it had only been when they'd started missing all their milestones that we'd realised something was wrong.
By 18 months, they couldn't crawl, or hold their heads up properly. Doctors had diagnosed them with spastic diplegia cerebral palsy. Me and my hubby Richard, 53, had been devastated.
‘It affects movement, co-ordination and posture,' the doctor had said. ‘They'll never walk.'
It had been a massive shock.
‘We'll always tell them they're perfect,' I'd wept to Richard.
It was a promise we'd kept. Yes, they needed wheelchairs, but they were as happy as any other kids of their age. Laurie loved robots, and Ellie was obsessed with her dolls.
But now they were growing up, it was getting harder. Only a few days before, I'd picked them up from school, and Ellie had been upset. ‘Everyone keeps staring at me,' she'd sobbed.
‘Well, forget about them,' I'd told her, wiping away the tears. ‘You're a very special girl.' Both feet were deformed, and the right one faced inwards, so it was quite noticeable. It was horrible to see all my little girl's confidence fading away.
Although Ellie was able to put a little weight on her good foot, Laurie couldn't stand at all. His feet crossed over each other. So, no matter how much he wanted to a kick a football around with his schoolmates, he'd never be able to.
While they were thrilled with the presents Santa brought them, something inside told me I had to try to achieve the impossible.
‘They want new legs,' I told Richard. ‘So I'm going to find the nearest thing possible.'
I started the new year by looking around for alternative treatment. When I took them to the foot therapy centre for their fortnightly physiotherapy, I asked about any new procedures.
‘Well, there is something I've heard about,' frowned the physiotherapist. He told me about a revolutionary surgical procedure that was being carried out in the United States. As he spoke, my eyes got bigger...
It was called selective dorsal rhizotomy, and involved the surgeon exposing a two-inch section of the spine. They'd then pick the nerves, one by one, and send a current through each to see if there was any signal going to the brain. Any nerves that weren't working would be cut because they stopped the functioning ones from doing their job.
It gave us hope. So I decided to look on the internet to find out more. They'd need to have it by their seventh birthday, I read on a specialist website. If it's left much longer, there will have already been too much damage to their muscles.
‘That's a year away.It's possible then,' I thought to myself.
But soon I discovered this treatment was likely to cost about £110,000 for both of them.
My heart sank. I was an admin assistant, and Richard was a plumber - we didn't have that kind of money!
And there was no guarantee it would definitely mean they'd walk again. But what I read triggered the fighting spirit in me. If there was at least some chance, that had to be worth it.
That night, I told Richard everything. ‘Are we dreaming of the impossible?' I asked him.
‘No,' he said. ‘If we really want this, we'll find the money.'
So we began fundraising like crazy, launching ELF - the Ellie and Laurie Fund. Word spread and soon money flooded in as family, friends, even complete strangers, organised sponsored swims, bag packs, dances, parties and raffles.
One kind-hearted couple even donated £10,000!
Once we'd got at least some of the money saved, we told the kids about our plans for them. ‘Santa couldn't find new legs for you,' I smiled. ‘But Mummy and Daddy hope they have.'
‘Thanks, Mummy,' they squealed. We told them about the procedure, and they were fascinated by it.
‘Mummy, look at this picture,' Ellie would call out. She was forever looking up the procedure on the internet and asking questions.
By some miracle, all the money was raised in time and we flew to St Louis Children's Hospital in Missouri for the operations. We'd stay there for 33 days because the twins would need specialist physiotherapy and aftercare.
The twins were so excited. But as they lay in their beds before being wheeled down to theatre, a lump formed in my throat. They looked so tiny... Were we doing the right thing?
Suddenly, Ellie grinned. ‘I'm getting new legs!' I couldn't help but smile. After three nervous hours, we were told the operations were successful. Just a few days later, the tendons and hamstrings were fixed. A week on, and the two of them were desperate to get out of their beds!
‘Mummy, I want to walk,' Ellie grinned, wiggling her toes. She'd never done that before! Still, I didn't want her raising her hopes too much. ‘You need all the special physiotherapy first,' I said. ‘Remember, it'll take months before you can balance on your legs.'
Soon, it was the day before we were due to fly back. ‘Look Mummy!' Ellie shouted.
Oh. My. God. She'd pulled herself up unaided and was stumbling through the ward. I was so shocked, I just stood there with my mouth hanging open as she walked for a whole minute!
Three months on, the twins have both exceeded our hopes. Laurie even managed a little walk on the treadmill the other day.
Looks like this Christmas they'll be walking tall. So Santa, you'd best deliver what they ask for this year, or they might walk to your house to find out why!
Isobel Finlayson, 31, Kilmarnock, Ayrshire