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All posts tagged downs syndrome

Always brings a proud smile to my face to write about the Down’s syndrome community. This piece for the Sun was one we organised back in March so it’s great to finally see it in print, just in time for World Down’s syndrome Awareness Month. Four mums tell readers why their children deserve to be celebrated for bringing sunshine into their families.

In the age of NIPT (non-invasive prenatal testing) the Down’s syndrome community fear that terminations will increase and the community will begin to shrink. What a sad world that would be. Let’s hope that alongside the new testing technique, we’ll see an improvement in the ‘bedside manner’ of medical professionals, who need to offer a realistic portrayal of what life with the condition actually looks like, in today’s world, not the 1970s.

For advice and support, Future of Downs is an excellent website. And you can read the Sun story in full here.

In Bella this week, the beautiful story of Jeni and her daughters, Effie and Blythe, who both have a rare form of Down’s syndrome. It’s incredibly rare for more than one child in a family to have Down’s syndrome, and Jeni explains how lucky she feels with such wondrous love for her children, it is a truly gorgeous read.

Out now in Bella!

For this glorious piece, mums Pippa, Emma and Vicky wrote themselves an open letter, going back in time to the day they found out their beautiful children had Down’s syndrome. The letters are poignant, powerful, funny, sweet and so lovely. Just like their children! I am so proud to work for the Down’s syndrome community, doing what we can to represent the reality of Down’s syndrome in the media so that families of the future understand that it’s not to be feared. Down’s syndrome has made these incredible children who they are.

Out now in Best. I worked on this piece in partnership with The Specials, which is a wonderful project. Check out their videos here.

You probably saw the video – it’s now had four million views! It’s a wonderfully uplifting idea, created by 50 mums in the Down’s syndrome community (and edited by one dad – Jamie!) which saw the world’s heart melt for their beautiful, gifted kids. In our never-ending ambition to educate the world on what Down’s syndrome really means, this video summed it all up to a beat. It means happy families. It means clever kids. It means sunshine and smiles and laughter and tears (happy tears!)

Here, three of the mums featured in the video share with Bella magazine what it was like to see their kids go ‘viral’ … and what a profound effect on people’s understanding of Down’s syndrome they hope the video will have.

Happy World Down’s syndrome Day! Time for my annual love fest – click below to see a collection of the incredible families I’ve written about in the last year. I feel so incredibly fortunate to be able to use my pen (alright, keyboard) to celebrate so many inspiring young people. These are the game-changers, the rule-breakers, the cliche-defiers – while there’s never been more urgency to highlight what Down’s syndrome actually is (and not what medical professionals would STILL have us fear it is) these little legends are going about their legendaryness with aplomb. Just by being who they are, the ripple effect across society says We. Are. Awesome. So while NIPT (noninvasive prenatal testing) looms into view, the Down’s syndrome community are here to say #wouldntchangeathing.

For more information about Down’s syndrome, visit www.futureofdowns.com an online community offering friendly support for parents and an up to date, balanced view of life with the condition.

Read more

So, so proud of Kathleen! Such an honour to get to write about amazing women every day. Do I have the best job in the world, or what?! Kathleen and her mum Denise invited me into their world and let me champion their lives. Now more than ever, we need to show society that Down’s syndrome is nothing to be feared. Down’s syndrome is to be celebrated. Quick, before NIPT (non-invasive prenatal testing) causes a dramatic decrease in the number of people born with Down’s syndrome. As Kathleen will tell you, her life rocks.

 

Please buy Best Magazine this week to read all about Kathleen. She’s going places!

Here’s a story sure to make you smile! The beautiful family Judy built – her ‘custom made’ family as she describes them! Unable to have children of their own biologically, Judy and Jim set out to adopt. Tom was their first child and they thought he was more than they needed… until they heard about Katie. Both children have Down’s syndrome and both children are excelling and wonderful and keep Jim and Judy on their toes even after all these years. Sounds like family life then…
For information and support about Down’s syndrome, visit www.futureofdowns.com

 

 

And found! Here’s the story of beautiful Bethany, a young lady looking for love on Channel 4’s Undateables. While her TV dates didn’t work out, a chap called Tom was watching and took a shine to our Beth. Through mutual contacts he got in touch and the rest, as they say, is history! Tom and Beth have been together over a year now and are madly in love. He tells her she’s beautiful every day, which is just what Bethany needed to hear.

Huge thanks to Bethany’s mum Bekki for sharing their lovely story with me.

To find out more about Down’s syndrome and get support from other parents in the community, visit the Future of Down’s website.

Out in Take a Break this week!

DANIELSrachelTAB (Large)Hello everyone! Happy World Down’s syndrome Day – a momentous global celebration uniting every corner of the world. You can read more about the events taking place here. 

Last year I wrote a blog charting all the stories I’d been lucky enough to write in the preceding 12 months, and I did the same the year before… Here I am again! I am so, so proud to have written so many life-affirming stories about extraordinary people in the Down’s syndrome community, who have kindly welcomed me into their fold. Together, we have championed Down’s syndrome and illustrated over and over again that Down’s syndrome is no impediment to a fulfilling, happy and rewarding life, that society need not fear Down’s syndrome, that we are, in fact, lucky to know these talented, charming, confident, gorgeous individuals.

NIPT (non-invasive prenatal testing) continues to gather pace and what I’d like to be writing about this time next year, is that the NHS retrained all medical professionals in the reality of Down’s syndrome, so that the inevitable increase in prenatal diagnoses is accompanied by a fresh and realistic portrayal of what life might have in store. To screen out Down’s syndrome would be to create a society lacking diversity and says more about society than it does about Down’s syndrome.

To the Down’s syndrome community I say I love you and I say thank you. Thank you for continuing to let me write about and celebrate you. Here’s this year’s collective of our stories: Read more

DSUOwoman (Medium)Super pleased with this three page extravaganza in Woman magazine this week! Down’s syndrome has been in the news a lot in the last few months because the NHS has approved a new antenatal test that will make diagnosis easier to detect. The Down’s syndrome community fear that the NHS approach to delivering this diagnosis is not up to date and realistic. It is, sadly, still delivered to parents in an outdated, often rude and terrifying way.

If prenatal diagnosis is going to become more common, the NHS needs to review the way the news is delivered. The old leaflets don’t portray a realistic future for children who have Down’s syndrome today. This has got to change. And that’s what we’re campaigning for here and across numerous media platforms. Tell it right, start it right.

I am so proud of my work writing about the Down’s syndrome community. If you would like to share your story, please get in touch today.