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All posts in Illness

In this weekend’s Mail on Sunday, we shared the story of the magnificent Dexter, a wonderful little chap who has a rare genetic condition which means that he is unable to feel the sensation of pain. It is a complex condition which raises a myriad of challenges for his parents, as they battle to keep him safe from harm.

As mum Lindsay states, life would be easier if Dexter loved fluffy things like feathers and teddies, but Dexter prefers tools, tractors and trucks. Give the boy an engine, some kind of machinery or a toolkit and he’s in bliss. His knowledge of tools puts me to shame, as I don’t know my saw from my hammer.

The plaster cast you can see in this photo has now been removed and Dexter’s doing well. He’s about to celebrate his fourth birthday. Happy Birthday champ!

The story can also be read online here.

Janine is one of the most wonderful people I have ever written about. I just wish that I wasn’t writing about the heartbreaking circumstances Janine finds herself in. We’ve worked together lots now and she is the funniest, warmest, most loveliest woman ever. Her daughters have inherited all those beautiful traits and also have a way with words that puts me to shame – check out the letter they wrote their mum in the attached article.

Janine has secondary incurable cancer. She has a hell of a fight on her hands but fight she does. Meanwhile, she’s also raising awareness of the importance of women (and men) checking their bodies for lumps and bumps regularly – making a boobie date once a month. Check out Janine’s website here. 

She’s also frantically raising money for her own treatment plan because the NHS is out of options for her. So if you can spare any pennies, click through to Janine’s site and donate.

Read Janine’s story in this week’s Woman Magazine. And here she is winning Mum Idol in the Sun on Mother’s Day. A most deserving accolade for this SuperMum!

brookjaninetab-jpeg-largeI adore this family. Janine radiates positivity, humour, confidence and charm – all things that would disappear from my personality if I was facing what she is – a terminal cancer diagnosis. But her personality shines through her daughters too, who have grown up in the shadow of cancer and who are adorable, brave young girls. The letter Sophia wrote to her mum brings a tear to my eye and was the inspiration for us to do Janine’s story in the form of a letter to her daughters. It certainly packs an emotional punch.

Janine has a message for us all – remember to check your boobs. She runs a facebook page called Boobie Date and hopes her story will remind us all how important it is to check for unusual lumps regularly.

Please visit breastcancercare.org.uk for support.

yorklejlabellaThis is the story of Lejla, a young woman struck with breast cancer, determined to fight with a smile on her face. Her indomitable spirit was such a joy to write about. Cancer pushed Lejla to try new things, get a divorce and eventually, fall in love with new fella Chris. She was warned on many occasions that her cancer drugs would affect her fertility and so she accepted it was highly unlikely she’d fall pregnant. Instead, Lejla discovered she was having twins, and no-one had mentioned that one of her drugs is also a known fertility booster. It’s a truly incredible happy ending for a lovely family.

Out in this week’s Bella to mark Breast Cancer Awareness Month. If you’d like to share a story about cancer, please do get in touch today.

defiedoddswo-largeTwo children who’ve grown into amazing young adults, celebrated in this week’s Woman’s Own. Firstly we have Zoe, who was born extremely premature. Doctors warned her mum, Caroline, Zoe wouldn’t make it. But she fought on… and slowly she grew. Now, she’s a public speaker, she’s running marathons and being an all-round amazing woman.

And we have the dashing young photographer Oliver, who was diagnosed with Down’s syndrome shortly after birth. Needing operations on his heart left his mum, Wendy, terrified, but Oliver showed a fighting spirit even back then. Determined to encourage her son to be whoever he wanted to be, Wendy is Oliver’s number one fan and he has rather a lot of them! Check out his website oliverhellowell.com to see examples of Oliver’s stunning photography.

If you’re children are little miracles, I’d love to hear about them. Please get in touch today! Pick up a copy of this week’s Woman’s Own to read about Zoe and Oliver.

So proud of this family – a raw and honest account of what happens when a father struggles with depression after the birth of his children. Paternal postnatal depression is rarely talked about. Men are supposed to be big tough guys aren’t they? Therein lies the problem – men feel like they can’t talk about their feelings, further exacerbating the loneliness and isolation. Matt and Lesley have opened up about their experiences in the hopes of encouraging other men to talk. Because talking is half the solution…

If you’re in need of help and support with any of the issues raised in this feature, please do visit nct.org.uk for more information.

To share your own experiences with us, please get in touch today. Lesley’s story is in this week’s Woman’s Own.

ELMERkatieTAB1 (Large)When Katie was told her beautiful newborn daughter Emily had just days to live, she was devastated. But Emily lives on. Emily’s Star is the charity that Katie set up to help other families going through what she did, so that Emily’s name and memory would live on and help other people. She’s an amazing woman with never-ending energy and enthusiasm for helping families going through the hardest of times. Katie talked about the Emily’s Star project with incredible strength and I adore everything she’s about.

To find out more, visit Emily’s Star here.

If you have a story you’d like to share, get in touch today. It’s not always easy to talk about the challenges we face in life, but at Phoenix, we promise to look after you!

LYNCHkayleighWO (Medium)There is something about the way we’ve written Kayleigh’s story in the style of an open letter to her beautiful daughters that really knocks me for six. I cry every time I read this story! Kayleigh is an incredible mum, so generous, so thoughtful, so kind. Sadly, she is battling cancer and has been told there’s only a few options left. But Kayleigh keeps fighting, for two reasons: her two gorgeous daughters.

Kayleigh is using her fee for the story to take the kids on an adventure. Money very well spent, I say. Kayleigh – we love you! If you’d like to donate to Kayleigh’s experiences, please get in touch with me and I’ll organise.

This is the heartbreaking story of twins Harry and Jessica, growing up side by side, their mannerisms mirrored in everything they did. Just looking at their photos makes my heart burst. Sadly, when Harry was five years old, he suffered a fatal asthma attack. Jess is 12 now and growing up without her twin, there’s someone missing from her photos these days. But the duo had those five wonderful years together.

 

In Harry’s memory, mum Odette has set up Harry’s Rainbow, to support other families in similar circumstances. Please do visit their website, donate, get involved, help in any way you can.

Odette shared her story with Woman magazine. If you’d like to share yours, please get in touch today.

It is without doubt the proudest achievement of my career, to continue to write so many wonderful stories about and for the Down’s syndrome community. Last year I wrote a blog looking back on all the stories I’d published, to mark World Down’s Syndrome Day. So here I am again as the collection continues to grow!

I am honoured that so many people in the Down’s syndrome community put their trust in me. Telling stories with person-first language, ensuring sensitivity and tact are employed throughout the journey and helping to spread a powerful message, I am humbled to be a small part of a lovely army. The message is more important than ever – this year saw the NHS introduce a new antenatal Down’s syndrome test. Would a world that eradicates disabilities and thus, that which makes some of us a little bit different, really be a better place?

Click here to see more of the stories I worked on this year… Read more