Stories

Stories >> Stories home >> Marriage made for heaven

Marriage made for heaven

How many tomorrows will Amy have with her hubby?


Published by: Andy Richardson and Jean Jollands
Published on: 15 November 2012

Piling food onto their dinner plates, I smiled as my brood tucked in. Mum to Amy, 13, Jonathan, five, Benjamin, three, and one-year-old Laura, mealtimes were full on. ‘Thanks, love,' my hubby Mark, 31, smiled, sitting down. I noticed Amy's fork trembling violently as she tried to eat.
‘It's okay, sweetheart,' I hushed, taking the fork from her. ‘Let Mummy do it.' The table went silent as I fed my teenage daughter like a baby. ‘What's wrong with Amy?' Jonathan asked, shocked. But I couldn't answer him, as none of us knew what was wrong.
Born 12 weeks premature and weighing 2lb 11oz, she'd always been tinier than the other kids. But she was a feisty little thing, full of energy.
Yet over the next few years, she was diagnosed with hearing loss, learning difficulties, and constantly fell over. She also developed a tremor. Doctors couldn't tell us what was wrong with her.
Just a year later, Amy was slurring and she could barely feed or dress herself. ‘That's it, love,' I soothed one day, easing her blouse on. ‘Thanks, Mum,' she said quietly.
I remembered when she was two and I'd caught her cheekily jumping off the ironing board. How had it come to this?
Desperate, me and Mark appealed in the local paper for anyone with experience of Amy's symptoms. Luckily, a neighbour read it and gave us the contact number for Dr Ed Neilan, a pioneering medic at the Children's Hospital in Boston, USA, so I phoned him. ‘It sounds like she has Cockayne syndrome (CS),' he said. ‘People with the condition look young on the outside, but on the inside, their bodies are ageing rapidly.' They suffer developmental delays and debilitating conditions normally linked with pensioners such as strokes, tremors and hearing loss.
Dr Neilan was an expert in the rare condition and offered to see Amy. ‘At last, someone is listening,' I wept to Mark. 
Using money collected by local fundraisers, I flew with Amy to Boston. ‘There's no cure, but we can give Amy medication to lessen her tremors,' Dr Neilan explained to us.
But I had to face reality. ‘Most people with the condition don't live past their 12th birthday,' I sobbed to Mark. 
‘Well, Amy's 14!' Mark insisted. ‘She's beaten the odds before and she can keep on beating them.' 
On the second day of our trip, a slight boy with mousey hair stopped at our restaurant table. ‘Pizza!' he grinned at Amy, sitting down beside her. ‘I might have to share it with you!'
‘I'm Nick,' he continued. Nick Jaminet, 14, was also a CS sufferer and was there with his family. ‘My favourite actor is Will Ferrell!' Nick told Amy. ‘Mine too!' she smiled. Soon, they were chatting like they'd been mates for ages as I got talking to Nick's parents Jennifer, 44, and Jerry, 46.  
Back in our hotel room, Amy couldn't stop talking about her new friend. ‘He looks just like me!' she grinned. CS sufferers often have smaller than average heads and deep-set eyes. Now I realised what it meant to see someone like her. She wasn't alone anymore.
We swapped numbers before returning home. ‘I think someone's well and truly smitten!' Mark winked, after hearing for the umpteenth time what Nick's favourite film was. 
She emailed and Skyped Nick all the time. ‘I love you this much!' Nick grinned at her on the webcam, stretching out his arms. Over the next few years, they grew closer. They would fly to us or we'd see them when Amy went to the States for her treatment.
‘I don't think I've seen her happier,' I said to Jennifer on one trip as Amy and Nick sat holding hands. ‘Nick, either,' she said wistfully. ‘They're head over heels,' I grinned.
Three years after they'd first met, we helped Nick surprise Amy while we were on a charity-funded holiday in Florida. ‘What are you doing here?' she whooped when he knocked on our door. ‘Will you marry me?' he asked, his hands shaking from tremors as he held out a gold solitaire ring. ‘Yes!' she squealed. ‘Mum, I'm getting married!' Mark and I were in bits.
They were only 17 but, when your daughter's battling a condition like this, you don't tell her to wait till she's older...
Amy's body, however, was slowly shutting down. Just one year on from that perfect
day, we had to push her everywhere in a wheelchair.
Always so positive, she now seemed broken. ‘Why don't you just take me up there now?' she raged, looking skywards. This time, I couldn't hold back tears. We'd never discussed the fact she or Nick were unlikely to live long. But now I realised she understood. By now, Nick was declining too. His tremors were worsening and his hearing was failing. As they Skyped each other, he placed his hands on the webcam glass. ‘I just want to be with you, Amy,' he said, helplessly.
Soon after, Mark, me and Nick's parents agreed they should have a wedding blessing to show the world just how much they loved each other.
Everyone helped. A local wedding shop gave Amy her wedding dress for free, a group of local women raised funds to donate the bridesmaids' dresses and a local salon agreed to do Amy's hair and nails. So, on July 4, 2010, at a hotel in Chester, we all gathered for Amy and Nick's big day.
I waited patiently outside her room while she got ready and had her hair and make-up done.
But finally... ‘Ready, Mum!' Amy called. I gasped as I saw her, sitting there in a sparkly
veil, tiara and white flowing gown. ‘You look beautiful,'
I hushed. We wheeled her from her room on a trolley dotted all over with pink ribbons.
As we entered the function room, I gazed at the 13 little bridesmaids and nine pageboys. All of them were CS sufferers. ‘Good girl,' I winked at three-year-old Taylor-Louise, as her mummy carried her along.  
As Take That's Rule the World filled the air, Mark placed Amy next to Nick on two Posh and Becks-style thrones. ‘Hello, bride!' Nick grinned, shakily, looking dashing in his grey tails. Him and Amy looked as tiny as seven-year-olds. Nick weighed only 2st 7lbs now. 
I had to pop out three times during the ceremony, I was crying that much. This was the day I thought I'd never see. But nothing prepared me for the vows that the vicar had written especially for the pair.
‘These two young people have found love despite adversity, let that be a lesson to us all,' he announced.  When it came to saying ‘I do,' Amy and Nick needed me and Mark to repeat the words because they could barely hear. But we got there. ‘I do!' Nick yelped excitedly, planting a kiss on Amy's lips before the vicar had even finished!
Mark helped steady their trembling hands as Nick slipped a gold band on Amy's finger.
Two years on, their love is stronger than ever. Nick spent the summer with us. When he left, he rubbed his chest. ‘I'll keep you safe here,' he whispered to Amy, 21. But her condition is worsening each day. She has chronic kidney failure and can no longer speak clearly.
Four of the bridesmaids and pageboys from that day have since passed on from CS, including little Taylor-Louise, who died aged five, just eight weeks ago.
Amy's wedding dress was dotted with little blue butterflies. The man who first named the condition Cockayne syndrome always said that CS sufferers were like butterflies. Yes, they would definitely die one day, but they'd finally be free from this cruel condition. I don't know how long Amy and Nick have left - it could be two days, it could be two years - but we cherish every precious minute. 

• For more information, visit www.amyandfriends.org
 


Jayne Hughes, 46, Wirral, Merseyside