Mason gets up for school about 7am when his respite nurse leaves. We will do any dressings that need doing then feed him through his gastronomy tube and let it settle, otherwise he can feel sick getting straight into the car and travelling. We get him changed into his school uniform and I take him and his sister Georgia to two different schools. Mason loves school and hardly has any time off; even if he’s feeling sore or tired, being with his friends takes his mind off EB, and he never wants to stay off even though he is allowed to due to his special circumstances.
Mason’s most vulnerable areas are his throat after coughing up the lining of his oesophagus, and his hands- he’s slowly losing use of his thumbs and his fingers are seriously contracting, so we are waiting for more surgery dates. Mason has roughly 3-4 visits to GOSH a year and 3-4 visits to our local Poole Hospital a year. When he has surgery, however, then we are at great Ormond Street for weeks at a time- his hand surgery was 13 weeks in total.
Mason’s a very sociable little boy but because he is nil by mouth eating out can be quite difficult. Even though he loves going out we feel guilty that he cannot eat, but he always tries something and he has his iPad to keep him amused. It’s never ever stopped Mason wanting to go out as he is such a people person and loves being out and about with friends and family. He even sits with his friends at school lunch times and just chats with them without a lunch!
Mason’s often asked what’s wrong with him and I always step in and take over with an answer because he doesn’t like having to explain it because he sees himself as normal and knows he lives with a condition but hates to be constantly asked and doesn’t see himself as being different.
If Mason hears the word ‘normal’ his response is ‘what is normal?’ which is such a true saying!
I still explain what EB is regularly, especially if we are in a different town to where we live or if we are on holiday. Generally though, in our home town I have no need to explain as Mason is so well-known now; through our charity work he’s become a little legend in our area! I usually say that he has a fragile skin condition, or he has poorly skin or he has skin like a butterfly’s wing, but that he’s a happy little boy who lives life to the max and he’s our world.
Mason has great interactions with his friends/ peers/family, but his condition stops him from doing so much which he does get frustrated about- it never gets any easier but he also has learnt to accept it to a degree.
As parents it’s heart-breaking to see how much Mason can’t do, but we do our best and so does his school to adapt everything to get him involved in some way.