I need your help.

On the 22 April 2018 I will be doing my first ever marathon The London Marathon and the reason is simple for the love of Dylan and his family and all children and families like them.

On the 28th June this year Karen and Simon my friends had a beautiful baby boy called Dylan. But the celebrating was cut short as It was discovered very quickly after he was born that something was wrong with Dylan and after being taken to the Special Care Baby Unit they were told that he had Epidermolysis Bullosa (EB).  This meant that they couldn’t hold him in case they caused his skin to blister.  Can you imagine not being able to hold your own baby in case you hurt him, It would completely break your heart.  At only two days old Dylan had a skin biopsy taken,  Specialists from Great Ormond Street made a personal visit to Karen and Simon with the results of these tests.  That day their hearts broke, they got the most devastating news that Dylan has Generalised Severe Junctional EB, they call babies with this condition Butterfly babies because they are so fragile.  To explain the condition as I know someone had to explain it to me it is where the body needs a certain amount of protein to heal, and Dylan has none.  His blisters were not just on the skin, but internal too.  They were told that they would develop on his windpipe, voice box, and intestines, meaning he would either struggle to breath and eventually suffocate, he may get a serious infection, or he wouldn't be able to process food and will end up malnourished. To care for Dylan meant that on a daily basis they had to deal with changing dressings and bandages which sometimes involved the loss of skin and blood, they managed morphine, steroid nebuliserso, steroid creams, bursting blisters, and a variety of other medical things, In the end the list of different items they had to use came to 40. One of the most difficult things for Karen and Simon was to decide on Dylan's end of life options this is something no parent should ever have to go through and it breaks my heart that they had to.

Dylan passed away on the 29th September 2017 at just 3 months and a day. Karen and Simon never got to enjoy his first Christmas or his first first birthday EB took this from them.  But I know for the time they did have with Dylan he was such a happy and loved little boy so much so his mummy has asked me to share his photo of him laughing, he gave them all so much love which is timeless.

Nothing can prepare any parent for this but the The charity Debra have been an amazing support to them all.  They offer emotional support, made notes during medical appointments for them, support with options for memory making, and financially they helped Karen and Simon in purchasing additional specialised equipment for Dylan.  The kindness from this charity is incredible and still continue to be, 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.

For all of you that know me, you will know I was rubbish at sport at school and the furthest I had run before starting Parkrun 2 years ago was for a bus and this is why If someone had asked me this time last year would I run a marathon it would be absolutely not, and to be honest if it wasn't for Dylan & the wonderful charity Debra I would be watching 2018 London Marathon on the TV next year. However, in Dylan's short time with us he touched everyone's lives. I am now a member of a running club and already have done my first half marathon in preparation for the London Marathon and will continue to train through the winter. To run for Dylan, his family and The Debra charity who go above and beyond their duty is both an honour and a privileged. I promise I will give it everything I have.  Dylan never got old enough to even take his first steps so every step I take on the 26.2 miles will be his and for future EB children who with the money raised doing this will give them a better chance of having an amazing future ahead of them.

Thanks for taking the time to visit my JustGiving page and reading Dylan's story.

If Dylan's story has moved you in any way, please donate to help Debra to continue to support families like theirs.  You can do this anonymously if you prefer, and please feel free to share this link if you wish to.

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Love 

Emma x.