Stories
Trapped in her own skin
Our footie-loving girl's toughest battle was away from the pitch
Excitement surged through me as I watched my nine-year-old daughter Chelsea race across the field in her red and white striped footie shirt. Her arms flailed wildly as she kicked the ball and it flew up into the air. Holding my breath,
I waited and waited...Yes, straight into the back of the net!
‘Go, Chelsea!' whooped my hubby Darren, 34.
But as my little tomboy celebrated with her pals, I felt a lump form in my throat. I desperately tried to forget for a minute that Chelsea was very different to her friends...
The truth was though, beneath that long-sleeved shirt and football socks, Chelsea's skin was blistered and raw. She was constantly in pain. But she
never let it get to her.
Not long after she was born, Chelsea had been diagnosed with epidermolysis bullosa, an extremely rare and life-threatening genetic condition.
Yet, Chelsea had continually defied the odds. ‘To think doctors said she wouldn't even walk,' Darren smiled, knowing what I was thinking. ‘Yet here she is running!' I chuckled.
Thinking back to that day when doctors had broken the news, I remembered being in such shock.
‘It means her skin and internal body linings will blister at the slightest knock or rub,' he'd explained. ‘Chelsea's skin will tighten as the blisters heal, and this will cause even more serious problems.'
I'd been stunned. Her big brother James, eight, was a perfectly healthy young boy. Chelsea, however, had been incredibly unlucky - she'd inherited a faulty gene from me and Darren.
After spending three weeks on morphine at Great Ormond Street Hospital, we'd been allowed to take her home.
‘Your sister's like precious china,' Darren had explained to James. ‘Be extra careful with how you handle her.'
‘I will, Daddy,' he'd said, gently kissing her on the head.
I'd been terrified though, especially when it came to bathing her for the first time. Of course, all new mums feel slightly nervous, but my hands had trembled as I'd stared down at Chelsea.
‘You're going to have to be so very gentle with her,' the nurse had said, as she'd rubbed Vaseline into Chelsea's skin.
Just moments before, I'd seen Chelsea's bare skin for the first time, it'd been completely missing from her left leg, her right ankle and tiny hands. In the place of skin, there was just red, raw flesh.
‘You'll have to change her bandages every day,' the nurse had added gently, seeing the terror on my face.
It was strange really, because nothing shocked me now. I'd become used to seeing the weeping, blistered skin and hearing my daughter's cries of pain on a daily basis.
Every morning, we went through the same hour-long ritual of cleaning her skin, smothering it in Vaseline and covering it with gauze. It was heartbreaking.
What I hadn't banked on though was the amazing determination Chelsea was showing from a young age.
She was doing so well at school and regularly played footie with all the boys. Except after the match that day, I noticed something was up with Chelsea. She was snuggled up in front of the TV watching her beloved West Ham, but I sensed she wasn't her usual self.
‘What's wrong, sweetheart?'
I probed. ‘Some of the kids called me scabby today,' she finally admitted. ‘Ignore them,'
I hushed, wiping away her tears.
I wanted to scoop her up and cuddle her tight but, because of her skin, I had to be careful.
‘Just remember how special you are,' I said, stroking her long, blonde hair.
Although the name-calling soon stopped, me and Darren decided to put her in a school for children with special needs.
Soon, Chelsea was thriving again. She took part in school plays and continued playing her beloved football.
But a year on, a lot of her friends had hit puberty while Chelsea's condition had stunted her growth.
‘Why can't I just be normal like them?' she sobbed. ‘Why do I have to be like this?'
I was suddenly reminded of when she was four. That's when Chelsea had first realised she was different. I peered in her room one day and she was chattering away to her teddy.
‘This will make you better,' she said, putting a plaster on him in the same places that she had them. ‘I promise.'
I knew then that it was time to sit her down and explain things properly. ‘Your skin's poorly, sweetheart,' I said. ‘But it means you're an extra-special little girl.'
‘Like I've always told you, you're special,' I reminded her.
‘You're right,' she sniffed. ‘I'm strong and I'm special.'
I couldn't even begin to understand how tough it was for her. As well as the bandages on her legs, the skin around her neck was now very red, so it had become a lot more obvious.
Still, she was determined to live life to the full.
‘When I'm 18, I'm going out clubbing, Mum,' she'd giggle mischievously.
Soon enough though, she was back in hospital. She needed an operation to stretch the inside of her throat, because the constant friction of swallowing had caused scar tissue.
A year later, she needed a feeding tube inserted because she wasn't gaining weight. Then, when she was 14, she developed pancreatitis. She was so frail, she had to use a wheelchair. But there were so many people rooting for her.
‘We've arranged for her to meet the West Ham football team!' her headmistress told us one day. ‘Are you kidding me?' Chelsea yelped when we told her. The smile never left her face as we travelled with her to West Ham's Upton Park ground.
She was in so much pain now that I relished every smile on her face. Sadly, they were becoming less and less.
As the weeks wore on, Chelsea suffered jaundice and seizures. Soon, her weight had plummeted to just 3st. But she still put others first. ‘Let me help you with her dressing,' she said to a nurse tending to another little girl.
But just three months shy of her 17th birthday, doctors ushered Darren and me aside. ‘I'm sorry, she doesn't have much time left,' he said. Chelsea's fighting spirit wasn't enough to save her.
‘I know I'm going, Mum,' she said one day. ‘I'm just worried about how you'll cope.' Tears stung my eyes. ‘Oh love,' I gasped, gripping her hand. ‘Don't worry about us.' Still, right until the end, she was so strong. ‘I want to be cremated,' she added, bravely.
‘Whatever you'd like,' I cried.
As she faded, our family gathered around her bedside.
‘I love you so much Chelsea,' I sobbed. ‘But if you need to go, then go my darling.'
Moments later, she slipped away. We held her funeral two weeks later. Wind Beneath My Wings rang out as her coffin arrived on two white horses, just as Chelsea had wanted. We tucked her in with her favourite blanket and buried her ashes next to my mum Elizabeth and my sister Eileen. We asked for all donations from her funeral to go to Debra, a charity that helps those living with her condition.
Although she'd left us after such a short life, I was almost relieved she was free from pain. Her hero's smile and spirit will live on in our hearts forever.
• To find out more about epidermolysis bullosa,
visit www.debra.org.uk
Colleen Coote, 46, Basildon, Essex
Story search...
Story archive
Just added...
From chunky to hunky
Cuddly Colin was too roly-poly to...
read more...
The boy of steel
With his baby sister Holly to love,...
read more...
The great Moggy mystery
Just what was making all of our cats...
read more...
Most popular...
Quick reads...
No choccie, but life's so sweet!
I'm a reformed chocoholic...
read more...
Baa-ck from the dead!
My heart bleated for these poor sheep...
read more...
Brave undertaking
I've swapped cars for coffins...
read more...