Noah has EB Simplex Dowling Meara and was diagnosed at birth. We had never heard of EB at this time and struggled with the realisation of learning about our new lives with it.
Noah is the only person on both sides of our families to have it so everyone has had to learn and adapt to his needs. Noah lived in our local hospital for two months when he was born, and was then rushed to Great Ormond Street Hospital for another two months as he struggled with infection after infection.
Noah is now nearly 9 and daily life starts at 5:30. Some days his blisters can be quite mild and quick; other days, normally school days, he can have quite a bit of damage across his body, feet, and hands.
Noah doesn’t like to be different so he will push his limits with running, writing (instead of using his laptop), wearing his full uniform, and participating in every activity at school. By the time school ends his body is done, he comes home to another blister-popping session and bath and some homework as he doesn’t want anything different from his friends even when he is struggling. He goes to bed at 6:30 and watches a bit of TV as he is so tired from the day.
EB affects family life so much for all of us, my daughter does a lot with family and friends because I can’t always take Noah, and that makes me feel horrible as a mum having to choose one or the other.
Noah wishes people could understand the sheer amount of pain he is in sometimes; his smile masks so much that they just don’t understand.
Our hope is obviously for a cure, and for Noah be be able to do all the things he has to sit and watch his friends do without a second thought.
