We ran out of wound care last week. Ran out as in ran out. No Mepilex, No Mepitel, no Urgotul. Nothing. And the hospital didn’t have anything for us either. This past two weeks were intense wound care wise. I was expecting a parcel of wound care to arrive from someone but that didn’t pan …
Our derm called me the other day asking me to draft a budget for kids with EB that goes beyond the wound care dressings. To be honest, I thought little of it until I made contact with the EB community asking what they believed to be necessities for EB care. Everyone’s first response: ‘a cure’. …
In light of the fundraiser being organised for my daughter’s wound care needs, we’ve had requests from individuals asking if her photo can be passed around to others in the hopes of raising more awareness and so that people can see where/to whom their money is going. Whilst I understand the reasoning behind this request, …
Date: Dec 2011 About a year & a half ago, I was asked where in the world I wanted to travel to. I mentioned a long list of places then added as an afterthought, “and of course Makkah coz Muslims need to perform the pilgrimage if they’re able to” Now… my heart yearns only for …
“Look there! A beast!”, he exclaimed as he pointed to my little girl sitting in her pram. He couldn’t have been older than five years old, but his words still stung. My daughter was in hospital for yet another iron infusion, and I’d taken her down to the kiddies playground for a little bit. “Dear …
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, …
Today was a particularly bad day, EB-wise. I took off bandages for so long, that I started wondering if time had miraculously slowed down just for me. To aggravate me. To prolong the agony. Dear God, how has it come to this? I’m exhausted. I never want to have a day like this again. I never …
If I could put all that I feel into words, your heart would not be able to contain all that I have to share. You’ll never know how lucky you are, to be able to see your beloved’s face throughout the day. It’s been just over two years since my daughter’s facial wound appeared, and …
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 …
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 …
