There are far to many people to thank that have helped us so far to date on our Journey, but feel its important to try. The following is a list of people who have helped us and treated us with great care, without these people we would have truly not made it.. I am sorry for any professionals we have missed
* MY TALK AT THE CHILD BRAIN INJURY BIRTHDAY CELEBRATION *
JUNE 2012 – Botanical Gardens, Birmingham
Firstly I’d like to say thank you for CBIT for inviting me along to do this talk, it only seams 5 minutes ago since I was standing up at the conference in February and telling some of you in this room
all about our story. The response we had from that was really amazing and I would like to thank the people in this room for making that happen
I can promi…se you today there will be no videos, no sad songs or pictures just me for 15 minutes, this is a celebration after all and the last thing I want to do is have you all in tears again
So, I’m going to start by telling you why I’m here, how I became to be here and tell you a little bit about the experiences that I’ve had with Child Brain Injury Trust
I will save a bit of time for some questions at the end but please feel free to come and speak to me afterwards and I am happy to answer any questions I can
One request I do have if its ok is I have had some pictures of William printed out and at the events I have been doing I have had people sign and write messages on the pictures, If anyone would like to write a message on the pictures please do as I will be having them framed and hung in my office at home, I will leave them on the tables over there
Ok so moving on, about William and our Family
Well I am Dave William’s Dad and my wife is Julie, we have 2 sons Alfie who’s 5 and William who is now just over 3 years old. William was born in Feb 2009 everything was perfect a welcomed brother for Alfie.
For the first 14 months things had been really tough health wise for him as he’d been constantly a poorly child, always being sick and struggled to gain weight – he has been in and out of hospital but nothing diagnosed and we were led to believe he was ok and probably just had reflux, developmentally he was right on track, walking, talking all the things a little boy would do.
In April 2010 whilst I was on business in London I received a call that no parent should ever have to receive, William had stopped breathing and Julie had to do CPR at home, he had been taken to a local hospital to try and look into what had happened – I was in disbelief he had a cold, what was happening I asked myself?
Things went from bad to worse and after a series of complications he was transferred to a Large Hospital with a PICU ward his diagnoses at that stage was Croup now any of you health professionals out there will know a stay in PICU happens in less than 1% of all croup cases so it’s pretty rare unless there are underlying health issues, Maybe this was related to the rough 14 months he had had we asked ourselves. He was at that time placed into an induced Coma to allow his body to rest and see if they could work out what happened.
I can’t go into exactly what happened in this setting tonight due to my pending legal case although what I can tell you is during a procedure they decided to undertake he suddenly had a Cardiac Arrest for 6 Minutes and suffered a hypoxic insult were his brain received no blood to it.
He was later transferred to our now local hospital were it soon became apparent he had suffered severe brain damage as a result of his Cardiac Arrest
He could no longer eat, no head control, couldn’t move, speak, see, hear nothing he was a vacant shell after a number of tests it was revealed he had suffered major insults to his brain and we were warned that we were looking at a life ahead of us filled with disability and to prepare that he could stay like this for the rest of his life.
Now, that obviously sets the scene as to the emotional place we were at that time and it brings us nicely on to the point at which my life was introduced to CBIT
It’s all a bit of a blur to be honest but here we were with a brain injured child, no support, no were to turn for help and advice all we were doing was taking it in shifts to spend all our day with William and do research into what we could do to try and improve our situation. We were given no resources, nowhere to turn we just felt alone.
I stumbled upon CBIT and immediately gave them a call, Caroline answered the phone and instantly I felt safe, connected she wasn’t a health professional but she listened something that I have found most people are too busy to do
we spent hours on the phone sometimes day after day and she helped me get my head together, I am not going to discuss the personal content of the calls but I can tell you I was in a pretty bad, dark place, our life appeared to be over and in truth I probably wanted mine to be too
We set some small goals and decided to take things one step at a time, we maintained constant contact and eventually I didn’t have to even say who I was as the girls in the office new my voice which was amusing.
Caroline sent me out lots of resources, we looked at the CBIT website together and she sent me a great book that I could read to Alfie called Sam and the green velvet monkey which helps explain to young siblings what is happening to William. What was brilliant was that she also put me in touch with other parents who had been through a similar experience this really helped and added some substance to what the CBIT are all about, it’s real and you will never get that from NHS professionals.
Further down the road she sent me the Directory which was brilliant and ultimately led to me choosing a great legal provider who is also represented here in this room this evening.
The days, weeks and months passed and without knowing it we had laid a lot of things to rest and I realized that we didn’t need the so regular contact as much, the pleasing thing was though that if I stayed away to long she would email me or call us up to see how we were.
It’s important to say that it wasn’t just me that Caroline supported it was our whole family; most of the support we get from the NHS is centered on William and his acute needs and not the family as a complete unit so this was very much welcomed and very much needed
So where are we now? Well we are 2 years post insult and the Dark Days of PICU and the 8 Months we spent in hospital are well and truly behind us, William is home and has made a brilliant recovery from the diagnoses we were first given.
He can now see, hear has full range of movement, crawls and recently in the last 6 months he is pulling up to stand, cruising on furniture.
William had major heart surgery in Sept 2010 and has been left with a respiratory disorder called tracheamalacia for all you health professionals out there, it’s this that holds him back as every cough and cold affects him more than most children and needs steroids and inhalers for the next couple of years until his airway matures.
From a developmental perspective he’s doing well, he cannot talk as of yet but is very happy in himself and communicates in his own ways to get what he wants. He is developmentally delayed however and the effects of this are just too early to tell.
He in all probability won’t make a full recovery and will always have a brain injury but for now he looks completely normal, is very happy and loves all the attention and his ability to independently move around the home makes it all worthy while.
We go to the ends of the earth to try and help William and undertake lots of private therapy which we have to do our own fundraising for.
The thing with brain injury that we realize is it’s never going to go away for us, we will always need a level of support from CBIT, things change the older he gets present different challenges, changes in benefits like DLA all things that Caroline has supported us with.
Our Journey with CBIT has not always been one way, we have done lots to support back to in terms of fundraising and for the last 2 years I have trained and done the Silverstone half marathon raising funds in excess of £2000 as well as supporting with advice from my day job which is marketing/publishing to help with fundraising activity were I can, more recently I have accepted an invite to join sub group which I will offer my support to help bring my experience to help the charity.
Before I go on I think it’s important to say that yes the majority of my experience has been with Caroline its worth saying that she is backed up by an amazing team at CBIT who all do a wonderful job and over the last 2 years I have grown very fond of this charity and what it represents, they all do an amazing job and deal with immensely difficult situations that are always handled with the utmost care and attention from the top of the organization to the bottom of the organization.
Now something for you all to think about, did you know that a child will suffer a brain injury approx. every 30 minutes, that figure is more than children that are effected with epilepsy for which there are many charities and groups. For brain injury as far as I am aware CBIT are the longest established and the number one organization for offering free support and guidance to families.
I am probably going to get reprimanded for this part but are you all aware of the Fundraising effort called challenge 21 in which CBIT are trying to raise £210,000 to help families, families like mine if you are not aware please do speak to the team as I am sure they and indeed ultimately families like me really do need your help to ensure the Charity succeeds not just this year but for the next 21 years and beyond – The next areas for expansion are the North West, West Midlands, and the South West so if any of you guys fit in to these areas please do what you can as they really need our supporters help to raise this money and to raise awareness of brain injury in children.
couldn’t let this little talk finish without saying this bit before I end, it comes as no surprise that I think so highly about what the guys do at CBIT but there is a special someone who I regard as one of the most generous, kindest, sensitive people I have ever had the Pleasure of coming across whilst on our Journey.
It’s such a shame that she cannot be here tonight but unfortunately she had a disagreement with a tiled floor and high heels and now needs surgery to fix her broken ankle.
For the record and she knows this, Caroline you are truly a credit to your profession and your organization and without you and your support I truly don’t know where my mind would be, yes I appreciate that I wish this had never happened it has and we accept that, I just wanted to say that I am so happy that somehow I managed to cross your path, I genuinely do regard you as a friend and you will always be welcome in our life.
From myself, Julie, Alfie and of course William I wanted to say thank you from the bottom of our hearts, We do have a little something for you which is a framed picture of William which I will send to you by courier so you have it for when you are back at work.
I always take these opportunities to publicly thank everyone who is in Williams’s life and Care and in particular my wife Julie who amazes me every day for her selfless attitude and drive to get William to be as good as he can be.
Thank you CBIT