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 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………
Dylan’s loving mummy xxx