Swelling with pride

My girl's taught me how to cope with our curse...

Published by: Jai Breitnauer and Amy Thompson
Published on: 24th August 2010

A  terrible scream had my heart thumping. I knew that voice – it was my daughter Kirsty! She raced over the beach to me, clutching her face and crying in agony.
What the hell had happened?
‘My eyes!’ she wailed.
‘Just let me take a look,’ I soothed. ‘You’ve probably got a bit of sand or suncream in them.’
As my husband Richard, 36, and son Joel, seven, came rushing over, her hands dropped – to reveal swollen, puffy cheeks and lips.
My worst fears came crashing down around me. My little girl looked like the elephant man… like I had done myself in the past.
Blue eyes, red curly hair, a face full of freckles – my four-year-old daughter Kirsty couldn’t have looked more like me. ‘Peas in a pod,’ Richard always called us.
Sadly, he was right. Since I was 15, I’ve suffered with angioedema. A rare disorder, with no known cure, it causes my skin to swell. 
And it can kill. If my throat swells, my windpipe could close and suffocate me. But I’d never dreamed it could be genetic. I was the only person I knew who had it.
Taking Kirsty to hospital though, tests confirmed she’d inherited it, too.
‘This is all my fault,’ I sobbed to Richard. ‘What if other kids bully her?’
Although I hadn’t had it as young as Kirsty, I’d always been shy – I’d shut myself away, terrified of what people would say.
‘You weren’t to know,’ he soothed, hugging me. ‘She’ll be okay.’ This time she was – she was back to normal after the hormone injection doctors had given her.
But what about the future? She’d have to be so careful. We sat her down. ‘Am I poorly?’ she asked.
‘Sort of,’ I replied.
‘Why?’ she said.
‘Well, it’s because you’re so like Mummy,’ I told her. ‘We both swell up sometimes for no reason. But it soon passes.’
Kirsty thought about it.
‘Do Joel and Daddy have it, too?’ she asked.
I shook my head sadly. But she grinned. ‘So it’s just us girls?’ she beamed happily.
My little girl was pleased to be like me – faults and all. ‘Yes,’ I smiled, relieved. ‘Just us girls.’
From then on, Kirsty didn’t let her condition bother her. I’d wander into her room to find her caked in my make-up, clip-clopping around in my high heels.
‘I’m being you!’ she’d grin.
And even when her hands and face ballooned like the Nutty Professor’s, she soldiered on. It didn’t stop me worrying, though.
Then one day, when she was six, the worst happened. Her face swelled – and so did her throat.
Her breath came in panicky gasps. ‘Can’t… can’t… can’t breath,’ she panted.
Oh God! My hands shook as I bundled her into the car. ‘It’ll be all right!’ I promised, as I whizzed her to hospital. But the wobble in my voice gave away my fear.
Sitting in the waiting room while doctors saw to Kirsty, I suddenly felt that familiar tightening across my shoulder.
Turning to look at my reflection, I gasped at the huge swelling bulging out from my neck. I looked like the hunchback of Notre Dame!
Before I knew it, I was being treated, too. Luckily, we were both fine, but that day had been the worst of my life.
I became even more careful of her.
Kirsty, though, wasn’t bothered.
‘Where are you going?’ I gasped one day when she came down with a hand the size of a baseball glove. ‘School,’ she shrugged.
‘But… you can’t!’ I cried. ‘What if your throat swells, too? You’ll need to get to hospital…’ I couldn’t help being overprotective.
Kirsty rolled her eyes. ‘I’ll be fine,’ she insisted, grabbing her bag with her good hand. ‘The school can call an ambulance if I need it.’
She was so calm. Yet I could never let go of the dread that filled me every time she was out of sight.
That was why we’d never been abroad. ‘What if one of us starts to swell?’ I’d reasoned when she asked if we could go to Spain like her friends. ‘I can’t speak Spanish to tell the doctors what we’d need.’
But Kirsty was determined not to be beaten. Last year, she took up judo lessons. She had a great time.
But after a few weeks, she came home in tears. ‘My teacher said it’s too dangerous,’ she wept. ‘I can’t do anything with this condition.’
‘This is all your fault,’ she spat. ‘I hate you.’ Running upstairs, she slammed her bedroom door.
‘She didn’t mean it,’ Richard reassured me. ‘She’s just angry.’
I shook my head, the truth suddenly dawning on me. Kirsty looked like me, had the same awful condition as me. But unlike me, she refused to let it stop her having a normal life. ‘I’ve wrapped her up in cotton wool her whole life,’ I sighed. ‘I never realised, it’s not her condition holding her back – it’s me.’
I went to her room. ‘Sorry,’ she mumbled, tearfully.
‘It’s okay,’ I smiled. ‘Maybe we can find some compromises,’ I said. ‘How?’ she nodded.
‘Well, there are other clubs you could join,’ I suggested. ‘And I could see if there are hotels near a hospital in Spain.’
‘Really?’ she said, smiling.
‘Just because we have this condition doesn’t mean we have to stop living,’ I replied.
‘Okay,’ Kirsty, said, hugging me.
A year on, I don’t fuss over her as much. Kirsty loves going to art classes and we’re looking into
that trip abroad. Our relationship is stronger than ever and it’s
thanks to Kirsty. My little girl taught me not to let anything stop me having fun.
Tracey Holden, 35, Wednesbury, West Midlands