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Downs Doesn’t Define Our Children

We are very proud of every positive story about Down’s syndrome that we feature in the national press. Each story is one step closer to a society that sees children who have Down’s syndrome as no different to children who don’t. And what a wonderful society that will be. Here we have three mums and tots starring in New Magazine. Liane, 34, from Glasgow, and son Kai, Hannah, 24, from Shropshire, with daughter Ella and last but by no means least, supermum Michelle, 45, from Cambridge, and daughter Mara. 

Why the supermum title? Michelle has been spearheading a campaign called Lose the Label for some time now and it’s a global success. Little Mara is teaching the world: See me first. Michelle and Mara recently featured in Bella and the Sunday Mirror (see our recent stories for the display) and there’s a few more in the pipeline too.

You can join the Lose the Label campaign on Facebook here.
Read more about the New story below…

Michelle was fed up of the way people spoke about her baby. It was time for Mara to take centre stage…
Michelle, 45, explains:
I was 43 when I found out I was expecting and I knew my age increased the chances my baby would have Down’s Syndrome.
My husband Ben and I didn’t want an amniocentesis as it increased the risk of miscarriage, if only by 1%. We just wanted to meet our baby, whoever she may be.
Mara was born seven weeks early via C-section. It all happened so fast, but as I looked down at my little 3lb baby, I was overwhelmed with love.
The joyous moment was short lived – the following day, doctors warned me Mara might have Down’s Syndrome.
It didn’t phase me at all – I was more concerned with her health as she’d been born so premature.
I didn’t love her any less or mourn the life I thought she’d have. She was everything I hoped she’d be any more. I didn’t for one moment fear Down’s Syndrome. But I did fear what the future held for my baby.
We were up against prejudice from the word go.
‘The Down’s Baby’ – that’s how doctors and health care professionals referred to Mara.
‘She’s called Mara,’ I’d say. Why couldn’t they see Mara for Mara? It was always ‘the Down’s baby’.
When I took Mara to buy her first pair of shoes, the shop assistant took one look and said: ‘Your Down’s baby doesn’t have it too bad does she?’
It’s not Mara’s laugh or love of her favourite teddybear that people notice when they first meet her. It’s Down’s Syndrome. Doctors to strangers on the street – everyone saw the Down’s Syndrome first.
By the time she was six months old, I was starting to get really riled. Even people who knew Mara’s name would still call her ‘the Down’s baby.’ It was so offensive.
I decided to take action. I took a picture of Mara and made it into a poster, writing: I am Mara. I have Down’s Syndrome. I am not Down’s Syndrome. I am Mara.’
It wasn’t about pointing fingers and saying to people ‘You said it wrong.’ It’s about helping people come to a better understanding of what Down’s Syndrome is.
I posted it on Facebook and within days had hundreds of likes. Quickly, my campaign touched hearts all over the world. It was shared thousands of times. I set up a Facebook page that has over 5400 likes and shares.
Friends and strangers sent pictures of their children for me to make the same poster with.
It is amazing to think that in lots of little pockets and circles around the world, locally, nationally, globally, virtually and really – families are sharing Mara’s message.
I didn’t intend to start a revolution – I just wanted people to see Mara first. But the reaction has been incredible. It’s not just Mara who has been treated like this – hundreds of children have.
My campaign has spiralled and little old Mara is the poster girl, along with so many of her friends. We’re helping people understand the importance of the right words.
Mara is not a checklist of characteristics in a text book. She smiles, laughs, cries. She likes her dolls house and building sandcastles on the beach. She did everything you would expect a baby to do, just in her own time.
The reaction people have to Down’s Syndrome will effect Mara for the rest of her life – I used to think there was nothing I could do about that. But Mara is showing the world to think twice.
Mara is Mara. She is not Down’s syndrome. She’s so much more.
Hannah, 24, has Ella, two. “Ella makes me feel complete.”
I was tested for Down’s Syndrome when pregnant but they said the chances my baby had it were 1 in 230,000. So I just didn’t give it another thought.
But as soon as Ella was placed on my chest, I knew.
I had no idea what Down’s Syndrome was and felt overwhelming sadness. She was not the baby I was expecting and I cried for a week.
But then she needed open heart surgery. My maternal instinct kicked in – nothing was as important to me as her survival.
She was fragile and precious and needed me – now and forever. I stopped crying and started being a mum.
My partner, Chris, 25, never had any worries. I’d cry and ask him what we were going to do but he just stayed so strong. He didn’t see the Down’s Syndrome, he just saw our daughter.
Ella gives us an amazing life. She’s cheeky, funny and clever. She’s made me more understanding and patient.
I’m also less judgmental. If I see someone in the street, I don’t make snap judgements because Ella has taught me that there’s a lot more to people than meets the eye.
Ella is beautiful and now that I have her, I feel complete.
Liane, 33, and Kai, four. “Having Kai has made me a better person.”
I had no idea Kai had Down’s Syndrome until they first placed him on my chest – I could tell as soon as I looked at him.
For 36 hours, I was devastated. I knew nothing about Down’s Syndrome and cried non stop.
But then I realised, he’s still my son. He still needs me.
Along with my fiancé, John, 34, I had a job to do.
Kai is strong willed, determined, and developing just as a three year old should. He’s such a pleasure to be around and has made me a better person. I’m more patient, understanding and sympathetic.
And I have more strength – watching Kai battle through heart surgery made me realise if he could be strong, I’d be strong too.
I think it’s normal to grieve for the baby you didn’t have. It’s normal and it’s okay – no mum should beat herself up for that. I was scared life would be all about Down’s Syndrome but it isn’t – some days it just isn’t even a factor in our lives.
I’ve since had Kiana, 20 months old, and Kai is such a doting big brother. I might once have been worried Kiana might have Down’s Syndrome too but I didn’t have her tested – I realised even if she did, I’d still love her with all my heart.