To be told that your new born may not live past 2 years is something the baby books didn't prepare me for...
and sadly this is the reality for so many families living with a child diagnosed with EB in its most severe form. The week we waited for the results for my son Joshua is something that sticks with you for life. We were lucky: Joshua's 'intermediate EB' diagnosis means that there is no immediate risk to his life expectancy and although we are uncertain how the disease will effect him long term, some families never get that joy of long term. This is why I want to help find a cure.
So what is EB or Epidermolysis Bullosa? It's the worst disease you have never heard of. It's a genetic condition which means that sufferers skin is so delicate even the slightest of friction can cause blistering and skin to be taken off.
The way Joshua deals with his blistering and pain is truly inspirational. With this in mind its only fair that I go through some pain of my own through an Arctic challenge to help raise money for DEBRA. The trip is self funded so all money goes directly to DEBRA who is the charity who do such amazing work with EB families, through support and care and clinical research, that will one day hopefully cure this disease.
So what will my challenge look like? I will be spending 5 days learning key survival skills for the Arctic climate which will culminate in a 2 day survival challenge. This includes digging my very own snow hole for the night, hunting food and putting all my new found skills to the test. So please donate as much as you can to help raise money for this fantastic charity!