This is such a difficult thing to write, but it is important in order to raise awareness and valuable funds for EB research.

When our beautiful baby boy Dylan was born, he was rushed off to the Special Care Baby Unit, we were told he had Epidermolysis Bullosa (EB) and we couldn’t hold him in case we caused his skin to blister.  We were both completely heartbroken.  Day 2 of being in the world Dylan had a skin biopsy taken, we then had an agonising 2 week wait for the results.  As Dylan only had 2 small blisters at birth, we assumed (well desperately hoped) that he just had a mild version of EB.  When the Specialists from Great Ormond Street called saying the results were in and they were doing a home visit that day, we knew something wasn’t right.  That was the day our worlds fell apart.  We got the devastating news that Dylan has Generalised Severe Junctional EB.  The body needs a certain amount of protein to heal, and Dylan has none.  His blisters are not just on the skin, but internal too.  They will develop on his windpipe, voice box, and intestines, meaning he will either struggle to breath and eventually suffocate, he may get a serious infection, or he won’t be able to process food and will end up malnourished.  Dylan only has months to live, at most he could live to 1 to 2 years, but 90% of babies with this form of EB don’t live to their first birthday. 

To say we are devastated, well it doesn’t even come close to how we feel, our lives will never be the same again.  At the moment on a daily basis we deal with changing dressings and bandages which can involve the loss of skin and blood, we manage morphine, steroid nebulisers, steroid creams, bursting blisters, and a variety of other medical things, we currently have a list of 40 different items we use.  One of the most difficult things for us right now is trying to decide on the end of life options for Dylan, something no parent should ever have to go through.

The charity Debra have been an amazing support to us.  They offer emotional support, make notes during medical appointments for us, support with options for memory making, and financially they continue to help us in purchasing additional specialised equipment for Dylan.  The kindness from this charity is incredible, 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.

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

Love,
Karen, Simon & Dylan xx