Knowledge is Power #undiagnosed #UCD #dylansstory

Before Dylan, a SWAN was a large aquatic bird. I had never heard of a genetic syndrome as being undiagnosed. Before finding SWAN UK (Syndrome without a name)


I’ve since found out a SWAN looks like this! (& remarkably can drive a car!!)


I had absolutely no idea we were not alone. 6000 children are born in the UK every year with a genetic condition that cannot be diagnosed because it is so rare. As a parent of a SWAN, life can seem lonely and you can feel isolated, forever seeking answers to endless questions.

In order to raise awareness for the many children, like Dylan, who are living with an undiagnosed syndrome, I decided to take ‘Dylan’s Story’ public. Undiagnosed Children’s Day (UCD) is huge annual event so we rely on as much media coverage as possible to raise awareness. In 2015 ITV News were looking for an undiagnosed child at GOSH and Dylan was selected to feature in their following day’s programme whilst having his Heart Echo. Blink and you’d miss us. Hours of filming and numerous interviews condensed into ten seconds. I was so proud to have been part of UCD and for introducing Dylan to the world.

Later that week, prior to UCD15, Lauren Roberts (National Coordinator, SWAN UK) published a post on social media searching for a family to share their story live on the BBc’s Victoria Derbyshire Show the very next morning. Without hesitation I volunteered. Quick DIY spray tan, sleep in rollers and, voila, we were ready for our 6am pick up. Traffic was horrendous as we nipped in and out of bus lanes in the taxi. We arrived with only seconds to spare, whisked into hair and makeup, had a very brief introduction to Victoria, then we were live on her sofa. I hadn’t rehearsed; it all just came from the heart. Being interviewed about living with an undiagnosed child could be my subject on Mastermind.


Knowing people were watching and receiving their support encouraged me to continue raising awareness. ‘Dylan’s Story’ was born.


As a result of my subsequent blog and Dylan’s Social Media, I was contacted by journalists wanting me to share our story. We appeared in several publications including; the Radio Times, What’s on TV, Channel 5 News, local newspapers (Brentwood Gazette and Epping Forest Guardian),


Articles for GOSH (Patient, Donors and Staff) Magazines,


We featured (stared 🌟 haha!) on BBC’s DIY SOS for GOSH when they renovated a beautiful rooftop garden. To be asked to be part of DIY SOS at Great Ormond Street is such an honour albeit bitter sweet, for Dylan has been a patient all of his life. Dylan had great fun filming though and kept Presenter Nick Knowles and his team on their toes!!


We even appeared on a South American Breakfast show.
Social media has a huge impact on society and even the celebs love to partake! Because of the way society works, Dylan has gained a superfan who we are in ore of. A truly wonderful inspirational lady. Katie Piper we 💖 you.


We live each day making memories and we have made some beautiful memories whilst raising awareness.


We were literally raising awareness across the globe. The more exposure, the wider the audience. My mission is to spread the word #undiagnosed. No one knows what the future will hold for Dylan, but no one knows what the future holds for any of us. Dylan is an inspiration who continually reminds us what is truly important in life. Dylan has created an incredible bond in our family making us who we are: strong independent parents who take what’s thrown at us and make a life out of it.


In today’s age of tablets and smartphones, it is incredibly easy to communicate your story with the world. I urge you, if you have a message you want to spread, publish blogs/ vlogs, and create Facebook/ Twitter accounts. You will be amazed how much support you will receive and, what’s more, learn you really are not alone.


Undiagnosed Children’s Day is a nationwide event on Friday 28 April to increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK, the only dedicated support available in the UK for families of children with undiagnosed genetic conditions.

Last year fundraisers, schools, families, companies and donations raised a (approx) £20,000! With your help this year we can take it beyond this figure. To donate TEXT SWAN11 £3
(or any amount up to £10) to 70070 #undiagnosed

Dylan is also fundraising with an outstanding event.  Bigger and better than last years later this year. I am so exited I just can’t wait, and (all being well!) I will have 2 working legs this time to be able to join in. Raising funds for Dylan’s indoor and outdoor sensory rooms. To donate TEXT DYLS65 £2, £5 or £10 to 70070 #dylansstory

Raising awareness is just as important, if not more so than raising funds. Knowledge is power. Please spread the word (& donate a pound or 2 to both amazing causes. Please! 😘)

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