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
Close your eyes and imagine falling on your knees and scraping it so badly that it opens and bleeds. You try cleaning it but it burns to the touch leaving you in tears every time. You try asking for help, but no-one is able to assist you, because no-one knows what to do with a… Continue reading Why raise awareness?
When my little girl was about nine months old, I started noticing a worrying trend in her behaviour with other kids. I noticed how she’d put out her hand to play with other kids, but would quickly retract it when she saw the look of fear in their faces. You see, my daughter has Epidermolysis… Continue reading I feared for my little girl
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
Whilst scouting for a place to tan sheep skin this week, I happened upon an important realization; in this field called EB, one cannot be reactive! I never thought finding someone to do sheepskin tanning would be so challenging, I mean, I know sheepskin is sold at selected outlets in Cape Town, so there must be… Continue reading No more Ms Reactive
This evening I would like to make a special request; I’d like to ask that you keep my little girl in your prayers. The little fighter that she is, she rarely complains of any pain she may be experiencing. She bites it out and only whines when we’ve touched an open area or accidentally pulled… Continue reading It’s more than just a blister
After what feels like an intense battle of wills and “don’t do that’s” I feel replete as my daughter lay at my side suckling away. There are days, like today, where I feel this EB vibe is just too much for me to handle. Throw in a bit of teething and the fact that my… Continue reading Caregivers need…