By Karen, Dylan’s mum
After a healthy and low risk pregnancy, our beautiful son Dylan was born in June 2017.
He had two small blisters at birth. He had a skin biopsy the next day, then 2 weeks later we were given the devastating news that Dylan had Junctional Generalised Severe EB.
We were told he had weeks or months to live, and was unlikely to see his first birthday. Our brave boy had many external blisters and open wounds, but also suffered with internal blistering too. Sadly, Dylan passed away aged 3 months and 1 day.
We miss him every single day, and now do what we can to fight EB in Dylan’s memory.