My son was not diagnosed with EB at birth.
We noticed his first blisters at 4 months old. I had been to a few different GPs and was told he had hand, foot and mouth, and school sores (impetigo). I knew it was something more, so my mum paid for Jackson to see a dermatologist who straight away said he had EB and explained it all to us.
I was so heartbroken hearing those words “lifelong” and “no cure”, but my son is the toughest kid around, even on his lowest days when he’s wheelchair-bound and in so much pain he never lets it stop him from being happy.
EB will always be around and to find a cure would be so amazing so Jackson and others like him can live a full and happy life.