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If only there were just tantrums… poor Grace was dismissed by GPs as going through a ‘tantrum phase’. Sadly, what her change of behaviour actually revealed was the utterly devastating Batten’s disease. Mum Izabela shares her story in Bella magazine this week. It’s heartbreaking, but if her drug trial starts soon they hope to ward off and delay the onset of the debilitating symptoms.

For more about Batten’s visit the BDFA 

Another great resource is the website owned and run by the Rich family – The Nicole and Jessica Rich Foundation

I have written about the Rich family before and they are incredible. For support and information if you have just entered the Batten’s world, Gail is a fountain of knowledge.

Izabela’s story is out in Bella now.

What happened to Natalie is unfathomable. You may have read about her in the papers back on that fateful day and in the weeks and months that followed. We were a nation unable to believe her own partner, the father of her unborn child, could have done what he did.
But, he did. And that’s something Natalie had to come to terms with and move on from. In her incredible book, Still Standing, she goes into more detail about the relationship, the attack and what happened next. It’s written with raw honesty and I highly recommend it.

Natalie is a powerhouse – since recovering from her injuries she has become something of a Wonder Woman, taking part in all sorts of challenges and adventures to raise money for the Midland Air Ambulance.

Here she is in Closer magazine, out today.

Donna shares her story of how she watched Parkinson’s disease overwhelm her grandmother and her mother. Now battling it herself, Donna is such a brave and courageous woman, determined to give her own daughter the best life she can. It’s too soon to know if Beau has inherited Parkinson’s too but Donna lives in fear that she has.

With donations, research into Parkinson’s will find a cure before Beau grows up. Please visit Parkinson’s UK to donate.

Donna’s story is out now in Bella.

There wasn’t a dry eye in the house while I was working on this story – Jon’s love for his wife Rach shone through his words and it was an honour to write for him.

Over on my ‘charity’ page you can see the link for Jon’s fundraising campaign – he’s raising money for Breast Cancer Care to thank the charity for the support they gave his family during Rach’s cancer battle.

His story is out now in Bella.

Happy World Down’s syndrome Day 2019! It’s become my tradition to collate all the stories about all the legends of the Down’s syndrome community I’ve written about in the past year, to mark this wonderful, worldwide celebration. I have written about amazing children like Max, who I wrote about over Christmas for Best and Chat, who is just about the most gorgeous little elf in the world. I wrote a lovely feature for Best in the style of an open letter from mums Emma, Pippy and Vicky to themselves, offering advice on the day their children Corin, Leo and Audrey came into the world. Remember the Carpool Karaoke video that went mega-viral? We placed a story about a few of the mums involved, in Bella. And then there were a few stories about older people who had Down’s syndrome and are blazing trails – beauty queen Kate shared her story in the Sunday People and huge, happy congrats to Heidi, who shared her story in Best just recently, detailing the day her fiance proposed. I look forward to writing about your wedding, Heidi!

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.

Click ‘read more’ here to see all these fantastic stories in print! Read more

We’ll fight the NHS – Sunday Mirror

Categories: Campaign, Children, family, hot topic, Illness, Inspiration, Latest Stories, life changing, Medical, Sell My Story, Story
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I’ve worked with the incredible Rich family before, but last time, the story had hope and promise… We thought the pioneering treatment little Jess and Nicole were on might change the world for generations of kids with rare genetic diseases.
But now, the NHS has refused to fund the treatment which leaves these girls at a perilous crossroads. I love the NHS – what I don’t love is the government budget cuts which put lives at stake. It’s heartbreaking. The treatment works and the girls and many other kids in England (Wales and Scotland have made different decisions on the matter) deserve to stay on it. You can read the full story in the Mirror

Always extra specially proud of my stories for and about the Down’s syndrome community – here’s this week’s piece in Woman’s Own magazine celebrating Sophie and Joe, two brilliant kids who have brought sunshine and sparkle to their family and friends – and who happen to have Down’s syndrome. Their mums, Cassy and Vikki, were interviewed about the looming sense that science is attempting to eradicate future cases of Down’s syndrome – and what a sad world that would be.

Every time I write about Down’s syndrome, I hope that we help undo the tide of misinformation that has swept society for decades. Out now in Woman’s Own.

 

I had over 200 people get in touch wanting to be a part of this report – which goes to show what a mess we’re in! Too many kids are being passed around the system yet overlooked, while their parents are being made to feel like they are the problem.

This report, which I worked on for Scope, the disability charity, is in Take a Break this week. It is a very interesting, and sad, read. If you are affected by the details in this report please do visit the Scope website – they are a wonderful charity.

I mean… sometimes I just melt! Here’s Max and Cory, two beautiful souls brought together in tragic circumstances, now bringing Christmas cheer to children in hospital over the festive season, every year.

Such beautiful families who have been through so much, but keep smiling and making the world a better place. A very merry Christmas story indeed – out now in Pick Me Up.

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.