The start of the journey
I have just put Jack to bed and lay at the side of him for half an hour wondering what to write. I would like to start by saying a big thank you to everyone that has stood by us in the last six months, it has been without doubt the most difficult time in our lives.
I would like to say how much I love my family, my wife Alex and my two beautiful children Jack and James. The strength of my wife and her family throughout this difficult period has given me the reason to get up in the morning and begin the fight to give Jack the life he deserves. It goes without saying that my parents Margaret and Michael and my brother Matt have provided the family support and love, as they too have had to come to terms with the devastating news and for this I will always be eternally grateful. I would also like to thank my long term friend Danny for his continued support especially at work over the past 6 months.
I would like to thank my good friends 'the ambassadors' and 'trustees' of joining Jack who have stepped forward and committed to raising the much needed awareness and funds to fight this horrible condition. A big thank you to Stuart and Will at BD2 for providing us with the powerful website that is Joining Jack.
As I sit down to write this, Alex is upstairs packing the suitcases for our holiday to Crete. Although we are all desperate to get away for a break it's a stark reminder of how different life is now. As any of my friends will tell you in the past we've loved a holiday or two throughout the year and have really embraced our time away as a family from the stresses of work. Usually when we get on the M6 we have a sing song with Jack to the tune of "were all going on a summer holiday" and Jack insists on wearing his sunglasses even though it's usually raining outside!
This year the same excitement won't be there as our lives have been turned upside down with the news that he has Duchenne Muscular Dystrophy.
I remember last year getting on the plane heading home thinking life couldn't be any better. Jack was becoming that little bit cheekier, Alex was seven months pregnant with a little boy and I was really enjoying my work. Little did I know what we were coming back to.
Today is the start of a new chapter in our lives, one that I definitely would not have chosen but one I must begin in order to find a treatment that will change the progressive nature of Duchenne. At this point in time there is no treatment for Duchenne except the use of steroids which come with terrible side effects.
One of the main reasons we have started this charity is that over the last five years good progress has been made in this field of medicine and with the help of better funding and sharing of data I truly believe that this research will turn into treatments soon for our son.
Over the last few months we have been asked on numerous occasions how much money do you need to raise? and will that sort the problem out?
The answer to that is there is no figure.
We will promise to raise as much money as is humanly possible and put it in the hands of researchers around the world who have years of experience in this field. You listen to other parents and hear the phrase that "our children are a different generation" and there is hope. My answer to that is until we bring a drug to market the black cloud of Duchenne will always be above us. Please show your support as the clock is ticking!
Love you all