Joe lived with a neurodevelopmental disorder called Dravet syndrome. This condition is a rare form of epilepsy which also results in developmental delay, autism, ataxia (unsteadiness), sleep disturbance, and behaviour problems.  Children with Dravet syndrome are at a higher risk of sudden unexplained death in epilepsy (SUDEP) than children with other types of epilepsy.

Joe went to sleep as normal on the evening of Tuesday 26 November 2013.  "Wake up in the morning & find Daddy", he said, as he always did when I kissed him goodnight and tucked him in.  But he never came to find me on the morning of 27 November 2013 and despite our best efforts when we found him, he never woke up.  Our beautiful big eyed boy was taken from us prematurely due to SUDEP aged 14 years, 2 months and 16 days old.

Joe was a special boy.  He was a tall, handsome, brave, funny, loud, larger than life character who embraced life and lived it to the full.  He was challenging at times and obsessional, but so affectionate and this coupled with his beautiful toothy smile and flappy arms ensured he touched the hearts of everybody he met. 

Joe's thing was lorries.  He loved lorries.  He would pour over his lorry magazines, lorry books and youtube lorries on his Ipad for hours.  He loved looking at lorries on the motorway too and we would often be found 'lorry spotting' on random motorway bridges or at Liverpool Docks, as shown in the attached video.

We shared 14 years with Joe, a short time, but they were action packed and he made such an impact.  We are heartbroken at losing our Joe-Joe and hold dear the many treasured memories we have of our time together with him.  Loving our beautiful boy has made us all better people.  His amazing smile now lights up heaven and his memory is treasured within our hearts and will remain ever present in our lives forever.

It is in his memory that we are now trying to raise awareness and funds to assist research into Dravet syndrome. We are asking for you to support our efforts in the hope that one day a cure can be found for this terrible condition to prevent other children from dying and to prevent other families from suffering the pain and devastating loss we now feel due to Joe’s passing.

I have registered to run the Thames Meander Marathon on 23 August 2014.  Joining me will be my brother-in-law Terje and my best man Daniel. We will be starting at the YMCA Hawker Centre in Kingston, Surrey and run along for 26 miles and 385 yards of scenic riverside route and the Thames Path. I’ll have until then to go from 20 fags a day to running 26.2 miles... should be easy right!? :-)

Please be as generous as you can with your donation and please re-post Joe’s story in order to raise awareness of this rare condition.

Many thanks in advance of your kind support.