Down’s syndrome? ‘It’s made my life fabulous!’
To celebrate World Down Syndrome Day 2018, Kathleen Humberstone, 18, invites us in to her wonderful life…
Bonjour! I am 18 years old. And, like most teenage girls, I really like pizza, Champagne and fashion.
But I’m not entirely like everyone else. Most people have 46 chromosomes, but I have 47. Thanks to my one extra chromosome, I am described as having Down’s syndrome.
I like to see that extra chromosome as a bonus. Because of it, last year, I was invited to Geneva to speak at a United Nations conference – an opportunity my brother and sister didn’t have, as they’ve only got 46 chromosomes. Sorry, guys.
I think my life rocks. Let me paint you a picture…
I’m bilingual – my mum, Denise, 53, is French, so I learned English and French at the same time when I was little. Mum’s family live near Luxembourg and we visit at least three times a year.
My favourite French word is ‘punaise’ but it’s a bit naughty, so I’d better not tell you what it means!
I was born in Saudi Arabia because my dad, Andrew, 53, was working in the car industry there. When I was three, we moved to Dubai for four years, then India for three months. I can still remember the busy roads full of rickshaw taxis.
Then we moved again, to Nanjing, China, where
I learned a bit of Mandarin. I’ve always had a good ear for learning languages.
But the UK is my favourite country. We’ve lived here since I was nine, when we settled in Camberley, Surrey.
I am the eldest, then there’s Jess, 16, and Andy, 14. They love me, most of the time. And I love them, most of the time! Jess is beautiful and Andy is handsome, but they are always telling me off. Then again, I’m known to have a few words to say to them, too.
I live at home and am studying life skills at sixth form college. I want to go to a performing arts college next, as I love dance.
I’ve had the same boyfriend for six years now. Jack, 18, and I met at school. I’m a chatterbox, and my family tell me I’m bossy, but Jack’s a chatterbox, too, so we’re always competing for airtime. We dream of marrying one day and settling down.
I play tennis every week, and, in October last year, I was signed to a modelling agency called Zebedee. I’ve been in some incredible photoshoots already. For one, I had to wear very high heels and totter out on to a ledge in front of the Eiffel Tower. My legs were shaking, but models have to remain cool and composed, even when they are posing at a great height!
I hope to live independently, just like anyone else. I want to continue working as a professional model, and keep making speeches and being an advocate for Down’s syndrome.
It’s only in the last year that I’ve started to ask questions about Down’s syndrome. Before the new non-invasive prenatal test started making headlines, I had never given it much thought. It was part of me, and I liked being me.
Then, suddenly, everyone was talking about Down’s syndrome and a new test for pregnant women. Whenever I heard Down’s mentioned, it wasn’t in a good way.
That made me sad. My mum says it’s OK if people want to know if their baby has Down’s syndrome before they are born. The problem is that doctors still deliver the diagnosis like it’s the worst news in the world.
In reality, with the incredible advancements in disability support in our society, life for someone who has Down’s syndrome can be fabulous.
My friends who have Down’s are not scary. They are lovely. I am not scary! I don’t suffer because I have Down’s syndrome – I suffer when I hear that my condition might be eradicated because of this new test. What a boring world it would be if there was no one like me.
Kathleen’s mum, Denise, says,
Kathleen was diagnosed with Down’s syndrome the day she was born. I knew my role was to love her unconditionally and help her to be her best self.
I failed miserably on day one. I was too busy thinking of all the things she would never do. I thought she’d never make friends, never read and write, never go to school or speak French.
But Kathleen showed me she had other plans! So far, she’s achieved everything I feared she wouldn’t, and more.
Last year, she walked into the kitchen while the radio was on and overheard the presenters talking about Down’s syndrome. Her face lit up. She thought they were going to be talking about how wonderful it is.
But they were discussing the introduction of noninvasive prenatal testing, NIPT, which is increasing the prenatal diagnosis of Down’s syndrome. Lots of women decline the option of an amniocentesis because there is a small chance of miscarriage. The new test is safer and can diagnose a range of syndromes.
I’m not against NIPT. I’m against scientific progress being used to exploit fears. I want to see the diagnosis being delivered in an unbiased way, so parents can make an informed decision. Because, even two decades after Kathleen’s birth, doctors are still delivering the diagnosis in a way that doesn’t paint a realistic picture of what Down’s is.
They use words like ‘risk’ and list all the potential medical problems without listing all the benefits and best-case scenarios.
The day Kathleen heard those radio presenters, she said she didn’t want Down’s any more. I’d spent 18 years convincing her it was brilliant to have Down’s but, in moments, as the presenters said that an extraordinary medical breakthrough could be used to eliminate it, her confidence was knocked.
Knowing and loving someone who has Down’s syndrome is like putting on a magic pair of glasses. They help you see the world differently. There are ugly bits when it comes to other people’s ignorance and discrimination but, thanks to Kathleen, the world is also a whole lot more beautiful.
‘I want to keep making speeches as a Down’s advocate’