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On the 22 April 2018 I will be running my first (and last) ever marathon.

I am running The London Marathon in memory of my friends gorgeous little boy Dylan who very sadly passed away on the 29th September 2017 aged 3 months and 1 day.

When Dylan was two days old, his parents Simon & Karen were given the diagnosis that he was suffering from Epidermolysis Bullosa (EB).   A further two weeks passed before specialists from Great Ormond Street made a personal visit to family home and confirmed that Dylan had terminal Generalised Severe Junctional Epidermolysis Bullosa. Babies with this condition are also known as butterfly babies because they are so fragile, just holding Dylan caused his skin to blister and bleed meaning that Simon & Karen were unable to hold their little baby boy.

EB is a condition caused by lack of protein, the human skin consists of two layers, an outermost layer called the epidermis and a layer underneath called the dermis. In individuals with healthy skin, there are protein anchors between these two layers that prevent the layers from moving independently from one another. Sadly Dylan’s skin had no protein, his blisters were not just external, but internal too. His parents were told that blisters would develop on his windpipe, voice box, and intestines, meaning that Dylan would either struggle to breath and eventually suffocate, or he may get a serious infection, or he wouldn't be able to process food and would end up malnourished.

Quite simply no parent should have to go through what Simon, Karen and other parents of butterfly babies have had to but with the continued support from the Debra charity who helped provide support, additional specialised equipment allowing Dylan to be cared for at home and support with options for memory making.

The kindness from this charity has been incredible and still continues to be for Simon and Karen, but importantly they not only support those coping with EB, they also fund research. As there are currently no cures for EB, the progress they are making with research is critical.

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