Media Drama Take 2

As some of you may have seen recently, the story of Dylan’s ‘miracle’ recovery has made it back into the media. We were approached by Clic Sargent earlier this year to see if we would help promote their Easter Egg campaign because of the Easter connotations of Dylan’s story. We had so much support from Clic Sargent we felt it only right to give back, and agreed wholeheartedly! And it looks like they may have done quite well selling their eggs this year, with some branches completely sold out! We have agreed to help another charity later on in this year too so watch this space! For us, giving back is very important, as is raising any awareness we can for this rare disease.

When we told Dylan’s story again, the wonderful lady at Clic Sargent went over it repeatedly with us to make sure it was correct and that it didn’t paint us in a negative way as previously had happened. She really was phenomenal with the detail she put into all her work and kept us fully informed throughout. Sadly due to a delay with the eggs from Morrisons, and Dylan’s story previously being so heavily publicised, they struggled at first to gain much interest. When it eventually went to press this week, the vultures certainly started circling again and we had numerous phone calls and Facebook messages from agencies and reporters. Some places even shared the story and changed the wordings to suit their own agendas..

Sadly once again, our story has hit the press during a time where another family is fighting to keep their child ON life support, and our story gets used to paint a certain picture or to argue one side of the argument. I have posted my opinions on this before if you scroll back through previous blog posts and look for the one simply titled ‘Charlie’. Mike has also copied and pasted some of what I blogged onto some comments today. I do not wish our story to provide false hope for parents, but nor do I want it to be used as an ‘example’ of what the parents should do. It is a completely different scenario and nobody should be passing judgements, without all the facts, after what they’ve read online. I will not pass any further comments on this matter and anybody found to be using our story for their own agendas on this case will be reported.

And of course the Daily Fail have reshared the shockingly awful article they wrote back in 2016 which makes me look like a terrible mother. Not really what I wanted from all of this really at one of the hardest times of year for our family.  That has REALLY made me cross because I got a lot of abuse from that article originally being shared, not in the mood to rehash it all.

But the icing on the cake and what has really annoyed me most today, alongside all this talk about Alfie, is this comment made on the Metro Facebook page..

“Imagine when the kid is old enough to understand. I'd be like "Woah, you agreed to kill me?"”

What a complete and utterly idiotic comment!! If I hadn’t grown such thick skin, I could have been quite hurt by this! For your information mister, we didn’t agree to ‘kill’ Dylan, he was already minutes away from dying in front of us and getting worse by the second. What we agreed to was to let him slip away peacefully without any more suffering. The split second he made a minimal improvement and showed signs of life we fought and fought alongside him not eating, sleeping or leaving his damn bedside until he was stable. You cannot comprehend how much love we have for that boy, and our others, so to make such a comment is laughable. And truthfully Dylan is nearly five now and he isn’t stupid.. Heartbreakingly he does remember parts of the period he was on life support with not being fully sedated. He knows he nearly died and he knows he is a miracle and technically shouldn’t have survived. Secrets fester and breed contempt, openness and honesty to the age appropriate level is something we strongly believe in, so hopefully he will never ever feel the need to question our decisions and what happened.

Aside from that little rant I hope everybody had a wonderful Easter and thank you to anybody who went out and purchased a Clic Sargent egg from Morrisons!