Hello, my name is Paul Barker (aka Bakester) and I am a 39 year old father of 4 married to the very understanding, Alexandra.

I am running the marathon des Sables in April 2013, often described as the toughest foot race on Earth. It is a 155 mile run over 6 days in the Sahara desert and competitors must carry everything they need for the duration (apart from a tent). Water is rationed at checkpoints.

The MdS is something I've always wanted to do but has taken on extra meaning now I have met and got to know the O'Connor family. Their eldest daughter, who is at the same school as my two eldest children, suffers from Battens disease.

The pain that I will have to go through for one week is of nothing compared to the pain that they and others like them go through on a daily basis.

There are 3 main types of Battens disease, Infantile, Late Infantile and Juvenile. A child affected by Battens will be born apparently healthy before developing epilepsy, losing their ability to see, walk, talk and eat as well as developing dementia before dying a premature death between the ages of 5 - 30 depending on the type of Battens Disease they have inherited.

There is research into all types but, at present, no cure.

The BDFA - Battens Disease Family Association - was formed in 1998 by parents affected by Battens Disease who felt there was a need to have specialist Battens Disease support in the UK.

The BDFA is here to provide support so that families and professionals are given the tools to be able to better support the children and young adults so that they can reach their maximum potential.

THANKYOU SO MUCH FOR YOUR SUPPORT!!!