3 years on there is so much to say; about Huw’s big heart and about everything happening to remember and respect him xxx

There’s a lot to say in this update – most significantly reflections about Huw as it is nearly 3 years since we so sadly had to say good bye to him.  But there’s also lots of important news about fund raising, and use of the funds.

Carys and I were talking about Huw the other day – like we do every day – and reflecting on what everyone knows about him.   We were saying how much everyone knows about his whacky sense of humour – doing a somersault in a stranger’s front garden on his way back from school – shouting out ‘bread’ in the school dining room – being the life and soul at a party – making up nick names for people – and having fun.  But we were also reflecting most importantly on his huge heart – he was so open-minded and basically such a big hearted guy.  So many times he was there with a hug and kind words for his family and his close friends.  Those who knew Huw well, will know exactly what we mean and this is perhaps what we treasure most about our lovely, engaging teenager.  He wasn’t perfect (but nor should he have been perfect) – but he was everything we could have wished for.  His big heart is what I remember most fondly.

These defining characteristics of Huw are the driving force behind the thriving Huw Thatcher Trust, which benefited from a kind donaton of £300 in January from a share of the Christmas fund raising from the Colne Valley Mummers – a local drama group.  Thank you to Alex Beaumont (Huw’s former Junior School Headmaster) for his part in this unexpected and substantial donation.

Some of Huw’s former teachers are also involved in a cycling event this summer, organised by David Horne which is collecting sponsorship for the Trust so we look forward to hearing about that and the fundraising that will bring – thank you so much to that group.

I also want to tell you about an interesting project that the Trust is funding.  We have provided £4,000 of funding which is going to be used to develop a method of communication for a service user at Goole, who can no longer move or talk due to a serious brainstem stroke.

You may already know about communication devices that use ‘eye-gaze’ recognition when somebody can no longer talk or move – except they can move their eyes.  Communication is done through the use of a camera hooked up to a computer to recognise eye movement.  Users can then ‘tell’ the computer what to type using their eyes.

There is a BIRT service user in Goole (East Yorkshire) Mr Nick Bryan, for whom the eye gaze system is unsuitable.  He is 37 years old, and was in great health until he had a brainstem stroke in July 2012.  Due to the type of stroke, Nick has developed a condition known as ‘Locked in Syndrome’; he remains completely cognitively intact and able to make decisions for himself but he requires help with all his care needs.  He has been unable to move or communicate since his stroke – apart from spelling words out letter – by – letter using an upwards eye movement. He also has a small amount of movement of his thumb and switches have been trialled for use to control things but with limited success.  A project is being funded by the Huw Thatcher Trust to develop a system that can detect changes in electrical current within the brain – which would be suitable for Nick.  We hope this will be successful for this service user and that a communication method can be developed to improve the quality of his life.  We also hope that if successful, this system could be used for other people.  I’ll keep you up to date with progress on this project as it has great potential to help people whose lives have been torn apart by this kind of disability.

Our key event this year is 19forHuw – a 1,000 cycle event that will involve lots of people up and down the country.  Details are on the web site here and I’ll put details soon of how people can join in for part of it as they want.  This has already attracted nearly £500 – boosted by a generous sponsorship from Chris Walton at Danny Wilde, in support of Flemming Christiansen who is taking part in 3 days of the event.  It will be an amazing event – visiting 19 football grounds on bikes from Cardiff to Newcastle (and more) – to remember Huw and to raise funds through sponsorship.  On the subject of 19forHuw, I’m very grateful to my Mum for this photo taken at her house in 2009.  Huw and I always enjoyed the visits to see her before Cardiff City matches and we are using this photo as part of our memories of Huw when we are doing the cycle event this summer.

Finally, I’m very touched that Huw’s friends have asked if it’s ok to do something to mark the 3 years, so on 13th March we will be planting around 80 flowering blubs at Huw’s bench at Sands in Holmfirth.  Anyone is welcome to buy a tag (pictured here) and write a message – and tie it round one of the bulb plants.  We will be at Sands between 5.00pm and 6.30pm on Thursday 13th March do do this and tags can be bought for £1 from Heather Smith, Ellie Sinkinson, and Ellie Welch at Greenhead College, George Richardson and Kate Benn at New College, Sam Travis at Holmfirth High, or from me.  Thank you so much to Heather and the rest of the group.  Huw’s friends know that we couldn’t have wished for him to have had better and more loyal friends – old friends from years ago and new friends from more recent times.

I’ll be back with further updates, and in the meantime, we’ll still be thinking of Huw’s big heart as well as his fun loving nature.  This video I did for his 18th birthday last November is an attempt to express some of the lovely aspects of Huw Thatcher – who we miss and love every bit as much today as we did 3 years ago xxx