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! 😘)

Start spreading the news……..

So the lady who refuses to FaceTime, hates having photos taken has decided to take ‘Dylan’s Story’ public!!!!! 

  

Now don’t get me wrong I couldn’t be prouder of our little superstar Dylan and what he’s achieved in the last 12 months is incredible and continues to defy doctors but it’s the last 12 months that have been the hardest for me. 

  
As a mummy you expect your little bundle of joy to start school at the ‘normal’ age along with all of their current friends they’ve made along the way and looking forward to meeting new ones. 

As a mummy you dread this moment, as I did with our little princess but it’s a ‘normal’ & ‘natural’ process that all kids take. 

Now, I have said from almost 12 months old thy Dylan wouldn’t be starting school at 4 years and 2 weeks (September 2014) at, his health was detrimental to this decision and he’d have a lot of catching up to do for all the time, especially the first year of his life he’d spent most in and some out of hospital. 

By two years old I’d decided (in my head) I would home teach him. But thinking and doing are two completely different things. At present we are in the process of meetings and EHCP appeals and applications as special needs and special case education is soooooooo in depth. It’s harder than I imagined and incredibly depressing. 

It all started when the acceptance places got announced, by the first day of school I was in bits. Before I knew if October came and the 2015 application forms came out. I did look at a special school but as wonderful as it was didn’t feel it was suitable for my little special little boy. 

By the time the places got announced for September 2015 was the icing on the cake for me. I was a mess. Reality hit me really hard. 

It was time to tell the world ‘Dylan’s Story’ 

  

So now I am faced with the reality of my almost five year old baby who is on paper a sick child, with over forty health professionals involved in his care, a consultant for every part of his little body yet NOBODY can help me and tell me what’s wrong. 

Now I am in two minds as to what an actual diagnosis can tell me. A prognosis perhaps?? But wouldn’t that give me a prediction of his future?? An XY&Z syndrome wouldn’t change Dylan, it wouldn’t make him better, cure him so I really don’t know what I want to achieve by taking this public other than telling the world about Our truly wonderful amazing child. 

                     

So when SWAN UK (Syndrome without A name) asked if anyone has an appointment to be filmed at GOSH (Great Ormond Street Hospital) the week of Undoagnosed Children’s Awareness Day I jumped at the opportunity to share our cardiology appointment and share our story, to introduce Dylan to the world. ITN News is massive. Little did I know the two-hour interview was cut to all of 20 seconds doh!! 

  
 

It was fun. Bittersweet, but I loved it. I loved everything about it, apart from the reasoning behind it. I became alive behind the eyes again, it gave me a reason to get up in the morning (carefully applying an extra layer of foundation 💄) Lights, cameras, action…… it was so me, and Dylan enjoyed it and all the attention too. I felt like the whole last 12 months was lifting and I could get back to enjoying Dylan again. 

I had the TV buzz, so when the opportunity arose to be interviewed on The Victoria Derbyshire BBC News show I jumped at it. A car picked us up early Friday morning and we whizzed through the busy London traffic arriving at the BBC studio’s, escorted straight to the Green-Room where were met Victoria, had our make-up done and hair touched up. Before we knew it we were ready to go LIVE. Now I felt sick but there was no time. 3 2 1 LIVE…….. I was being interviewed on live television. Yikes……  But there was no time to feel nervous as talking about ‘Dylan’s Story’ is what I do best so I did my best and told the world. Obviously I could have spoke for hours as he is so complex but I hope I made the most of the 15 minute interview we had.  

If you haven’t already, please click on the link and watch our story. https://youtu.be/BpAwGZ3wieg

  

Our 15 minutes of fame!!! Bittersweet fame!!!

  

Now I really have the buzz for spreading ‘Dylan’s Story’ so I started a Facebook page so people can follow Dylan’s story, his daily ordeals and achievements in the hope that someone somewhere may have an answer? Seen another ‘Dylan’ or just be able to offer some advise. If you haven’t already, please like our page. https://www.facebook.com/dylansstory I had 400 likes overnight, this was giving me a new lease of life I loved that people were interested in ‘Dylan’s Story’ and wanted to follow his adventures. 

Yesterday before our neurology appointment we met with the publicists for the GOSH charity to spread our story even more and continued gratitude to the amazing hospital we spend so much time in. We had a lovely interview in the sunshine. 

   
 

So now I need to share our story with the world. Next stop I don’t know but watch this space………  

  
Until next time. Cuddle your little ones tightly 

Dylan’s loving mummy xxx