After an exhausting day

Yesterday was exhausting. And as is expected after an exhausting day, we all fell asleep, except…we forgot to do my daughter’s hand bandages. You see, our little girl has started requesting hand bandages at night as she realises she harms herself less when they’re on. Itching at night, is almost like an invitation to scratch,… Continue reading After an exhausting day


Blood-soaked bedding, this is what we wake up to on the daily. Sometimes it’s more, other times less, but this blood-soaked bedding is only a fraction of the blood my daughter loses daily. Sometimes I wonder “what’s the point of it all?”. Why try to prevent my little girl from scratching during the day when… Continue reading Helpless

When left untreated

Apart from her EB, I’d always thought my little girl to be quite healthy. What! With a healthy appetite and a healing body, why would I think otherwise? Until I heard those five words, that is. I’ve always known I was anaemic, but to hear that my daughter may be too was a bitter pill… Continue reading When left untreated