Slave of God… I am a slave of God, and I am married to a slave of God. And from us a slave of God was born. I am the daughter of the slave(s) of God and so too is every individual I come across. And the servants of the Most Merciful are those who …
“Mommy, I want to scratch!” says my little girl’s hands every time she plunges them into her bandage clad legs. “Mommy, I want to scratch!” cries her fingers every time they reach for her chest, back, head or neck. “Mommy, I’m itching!” says her face every time she rubs it against me attempting to make …
Innaa lillaahi wa innaa ilayhi Raaji’oon – From Allah do we come, and unto Him is our return. Growing up, these words were always uttered when someone was struck with a major calamity and I thus always thought a negative emotion should accompany it, but today, for the first time, I uttered these words with …
Just over a week ago, my husband and I received news that we were expecting, and as with most couples, we were elated. As the days progressed however, I experienced some breakthrough bleeding which eventually lead us to going for an ultrasound much sooner than we’d intended. It is with great contentment and peace of …
Dear well-meaning society When you ask to hold my daughter for the first time and I seem hesitant, please don’t feel offended; I am merely looking out for her well-being. Those close to our family, and who’ve been with us from the beginning of our EB journey will tell you I’m not trying to be …
I watched on as the people of the area ran to the cars, hoping to receive the food being distributed from there. I stood with my little girl, in the heart of a gang-infested, underprivileged community of Cape Town, and could do nothing but stare. These people were flocking for food, not because it was …
9 March 2015: An extract from my ‘baby journal’ “Indeed with difficulty comes ease. So Allah says in the quran. I’m sitting in Ward 7 on the first level of Mowbray Maternity Hospital. I must say, this was not the way I wanted to end up at Mowbray. In fact, I was content with giving …
You’d think every bandage change is the same for an EB mom. Sure, every mom and child is different, and their wounds blister and heal differently, but you’d expect mom to know what to do – but not this mom. Not this time. Until now, I’ve never really had to apply any mepitel or bandage …
These past five months have probably been the easiest, most difficult experience with Epidermolysis Bullosa. My daughter’s face has been filled with scabs for the longest time, and whilst scabbing isn’t necessarily a bad thing, in her case… well… her scabbing wasn’t normal. With her scabbing, or crusting as the doctor put it, there was …
Everyone enjoys a day out with family. It’s what helps strengthen familial ties and allows one a chance to break away from The stresses of life. For my husband and I though, a family outing can be a very stressful experience. Here’s why: Our daughter has a skin condition called Epidermolysis Bullosa Simplex, which, might …
