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!