It is time to hang up the heels and grab the trainers as in a few weeks I shall be attempting to complete the Great South Run in preparation for my London Marathon debut in April 2011.

You might think that I am keen runner – you would be mistaken – for those of you who know me I would much rather be a spectator at these events with a glass of wine in my hand!  The reason I have decided to sign up for both of these challenges is in memory of my son Max a very special boy who is missed dearly, and, to continue my support of the charity DebRA and their highly specialised Children’s Nursing Service.  

Max was born with an extremely rare genetic skin condition called Epidermolysis Bullosa (EB).  A person with EB does not manufacture the proteins needed to hold their skin together, this causes constant spontaneous blistering of the skin from even the gentlest of friction such as having a precious cuddle with your baby. Max lost his fight with EB at just 7 months old.

The EB gene in itself is not rare, 1 in 227 of us has a defective gene that causes EB. One in 17,000 live births will be an infant with a form of EB.  There are around 5,000 people in the living with EB.  First time parents often do not know that they are carriers and will have no prior warning that the child will be affected, until birth as was the case for my husband and I.

I don’t expect to complete the gruelling 10 miles in a spectacular time, for me it will be a case of managing to get round and knowing that I am making a positive impact to help raise much needed funds for DebRA who provide invaluable support to those affected and their families.

More information about EB can be found on the DebRA website together with Max’s story - http://www.debra.org.uk/ and http://www.debra.org.uk/max-s-story.html

Donating through this site is simple, fast and totally secure.  It is also the most efficient way to sponsor me.  DebRA will receive your money faster and if you are a taxpayer, an extra 28% will be added to your gift at no cost to you.

Thank you, together we can all make a difference.

Max William Boyle (24.07.2006 – 01.03.2007)

Twinkle Twinkle Little Star My Angel X