“You know how at airports and places like that, people slap a big, bright orange sticker on things like paintings and sculptures, and in bold white or black letters are the words ‘Handle with care’. Or when you’re shopping in the homewares section of a store and on the bottom of the wine glasses box there’s always a stamp saying ‘Extremely Fragile’. Well I think I should have had those words stamped on my forehead and a huge, orange sticker slapped on my butt prior to being born, so that as I popped out, those in the labour room would have been alerted to what was about to come.
I was born at Nambour Public hospital in February 1979. It was during my delivery that the doctors noticed that I had no skin on one of my feet. It was red raw! Hence, right about then, that sticker would have been handy. They had no diagnosis for what I had at the time as my condition was extremely rare. I was taken by ambulance to Royal Brisbane Hospital and on arrival I was placed in a humidicrib under the watchful eyes of doctors and many concerned family members and friends.
I guess you could say, from that moment on, my Mum’s career for the next 25 years was chosen for her. She was to be a full-time nurse, and, whether or not she had any interest whatsoever in nursing, she had no choice. Usually nurses spend years training and learning before they are ready to take on the responsibility of looking after a patient. My Mum was forced to learn as she went, from the moment I was born.”
…..paraphrased excerpt taken from ‘Never say no 2 a donut’ by Michelle Passey
From the moment our daughter Michelle was born our quiet, ordinary lives were turned upside down. We already had two daughters so we were not expecting the arrival of our third baby to be any different.
However looking back now I think I was being prepared for what was to come as while pregnant I had read an article in a women’s magazine about a boy having EB. This proved so helpful as I was able to contact his mother and she gave us invaluable advice on caring for our daughter.
We also joined the Brisbane DEBRA support group, which was very small at the time, but it was so good to be able to talk about EB with others who were going through the same life challenges as we were facing.
Michelle’s life achievements included being year 12 Vice Captain, working as a part-time office administrator, gaining her driver’s licence and even buying her own home.
It was a little while after she had passed away that we found her story on her laptop. With a lot of love and tears we have printed her book – ‘Never say no 2 a donut’.
Michelle had Recessive Dystrophic EB and she lived each day to the fullest.