A proud mum got an unusual tattoo to raise awareness of her daughter's condition. Zara Gabriel, 36, from Ramsgate, Kent, tells her story...
My daughter, Eleanor, thinks I am weird. And she’s probably not wrong.
Elle, 14, likes pink, I like black. Elle likes One Direction, I like Nightmare on Elm Street.
But I love her to bits – which is why I’ve got a 15in high tattoo of her on my back. It shows a darkly-clad vampire – me – carrying a beautiful angel – Elle.
Elle grimaces every time she sees it. And she’s not keen on her dad Keven’s tats, either. He’s got three big cats on his left arm, one for each of our three kids.
There’s a lion for our oldest, Georgina, 18, a tiger for our son, Daniel, 12, and a snow leopard for Elle.
‘They show how proud we are of you,’ I’m always telling Elle.
She won’t hear a word of it. As far as she’s concerned, she’s an ordinary teen. But Keven and I think she’s amazing.
And I have another very special tattoo that tells a tale, as well…
Born with muscular dystrophy, Elle’s muscles are weak, and getting weaker.
The life-limiting condition affects her ability to breathe, swallow, walk – things most of us take for granted.
She also has cardiomyopathy, an enlarged and weakened heart.
And Elle has dystonia, so she gets muscular spasms and is in constant pain.
She needs a wheelchair.
Muscular dystrophy’s genetic, but there’s no history of it in my family or in Keven’s. We were all tested when Elle was a toddler.
Luckily, the other kids didn’t have it. And neither did Keven.
But I did.
‘It’s a lot milder in you,’ the doctor told me at the time.
In the years since then, my condition has got worse.
First, I started feeling unsteady on my feet, then I started falling over whenever I exerted myself. I had to quit my job caring for adults with learning difficulties.
Then, when Elle was 8 in 2008, we finally had some good news.
‘We’d like to consider Elle for pioneering surgery,’ said the doctor at Evelina Children’s Hospital in London.
It was deep brain stimulation. Twelve neurostimulators would be placed inside Elle’s head, linked to a battery in her chest. They’d work like a pacemaker, delivering electric charges to the parts of Elle’s brain that control movement.
‘It could drastically reduce the spasms and shaking from dystonia,’ the doctor explained.
Of course, there were risks and we decided not to hide anything from Elle.
‘You could end up totally paralysed or worse, love,’ I said.
‘But it’s got to be worth a go,’ Ellie reasoned.
We talked about it and made the decision. Elle would have the nine-hour procedure.
Thankfully, it went well and, gradually, Elle was able to control her dystonia.
But that wasn’t the end of the journey. She still had to battle muscular dystrophy, which was getting harder as her muscles got weaker and weaker.
But Elle never complained.
Instead, she made the most of her situation, helping other youngsters like her.
And since 2014, she’s been an ambassador for Post Pals, a charity encouraging members of the public to send cards and gifts to ill children who need cheering up.
Earlier this year, I decided to do my bit, and raise awareness of muscular dystrophy.
‘How about a tattoo?’ I said to Elle and Keven. ‘Somewhere prominent.’
So people would stop to ask me about it, and I could explain about the condition.
Then, when I was tidying out a drawer, I found an X-ray of Elle’s head and shoulders taken shortly after she’d had the neurostimulators fitted.
‘I’m going to have a tattoo of your old X-ray,’ I told Elle.
‘Mum, that’s a great idea,’ she agreed.
Keven loved the idea, too. So did Georgina and Daniel.
A few weeks later, I had it done at Fine Art Tattoos in Ramsgate. Five hours and £300 later, it was done.
‘Wow,’ was all I could say.
Every detail of Elle’s X-ray was etched onto my chest forever.
‘It looks great!’ Elle beamed when I showed her.
I put a picture on Facebook. And people started sharing it.
Within a few days, I had emails from people all over the world asking me about Elle’s condition and the treatment she’s had.
‘Job done!’ I smiled to myself.
When I went out, I’d wear something low-cut to show off my tattoo. Loads of people asked me about it.
There have been haters. But I’m not going to let them bother me.
Neither Elle nor I know what the future holds. We take each day as it comes.
My tattoo has made me a walking billboard for Elle’s charities and raising awareness.
I’m proud to do my bit.
But most of all, I am proud of Elle – of all she’s achieved, her courage, bravery and spirit.
It’s an honour to have her image tattooed on me.
Right now, Zara is fundraising for a hydrotherapy spa pool and hoist to be built in the back garden to help Elle. She’d like to thank Strongbones Children Charitable Trust for their donation of £2,500. To find out more, please see www.gofundme.com/EllesAngels