I have known Vanessa for my entire lifetime. Our mums were very good friends, we were delivered by the same Dr/GP and we went to the same primary school but different high schools.
Vanessa was born with this debilitating, hideous & incredibly painful skin disease called Epidermolysis Bullosa. In the 70’s and 80’s, I remember it being referred to as “Cotton Wool disease”. Because if you had this disease, potentially your body would need to be covered in cotton wool, dressings and anything similar. These days, I believe children with this disease are called the “Butterfly children”.
If you read Vanessa’s brief story, you will understand the intensity and pain factors associated with this disease.
I have some vivid memories of growing up with Vanessa. I recall a time where we had a sleep over. Sleep overs were always at Vanessa’s place, because she needed to be by her mum around the clock, in case one of her wound dressings needed to be changed or in case there were any problems. The slightest bump or graze for Vanessa meant absolute trauma, not only for her, but for her mum, dad and sister.
The sleep over:
Vanessa had a double bunk bed in her room, but being girls, we had to be beside each other - so we could do as all girls do at a sleep over….which was talk….and talk….and talk, so we set up a stretcher bed next to the bottom bunk bed where Vanessa was going to sleep.
Vanessa was standing at the top end of the fold-up stretcher bed that I was going to sleep on. The front/top leg of the bed had not been folded out the whole way. I began to climb on the stretcher and then it happened….the top end of the bed scrapped down the entire length of Vanessa’s legs. Her skin is thinner than paper, so you can imagine the damage that had been done in the blink of an eye. Vanessa screamed a blood curdling scream and her mum came in to see the shocking accident that had just occurred. I don’t recall what happened immediately afterwards, but I’d say that Vanessa and her loving and supportive parents would have made an immediate start on the excruciating job of tending to her severe wounds, my mum was probably called over the phone to say “you’ll need to take Kylie home”.
That’s just one incident I recall vividly. I also remember some good times, like getting our ears pierced together, going to AC/DC concerts and generally getting into trouble and doing stuff we shouldn’t. But at the end of every day (good or bad), Vanessa always had a job to do, that was look after her skin. A very time consuming and painful thing she ABSOLUTELY has to do every day. It’s relentless, she does not get a day-off…EVER!
Vanessa has 2 kids, both not affected by this freaky genetic mis-match. She’s a great mum, a force to be reckoned with, she’ll tell you where to go and she’s not “backwards in coming forwards”.
Vanessa often gets sore eyes, this is something that obviously hinders her “already hindered” ability to get by. Like I said - no day off EVER. She has a medical team of Doctors that support her; everything from pain management, endocrinologists, dermatologist, podiatrist, dentist, physio, occupational therapists and the list goes on.
She visits Kogarah hospital every 3 months to be assessed by the medical team, her medications reviewed and probably most humiliating for her, is having to bathe with Doctors present. She is participating in research to help find anything that will remotely improve the disease and improve quality of life to the 1,000 people in Australia living with this condition.
Vanessa’s daily routine begins with a bath. Bathing her skin in bleach, salt & QV both oil. If you want to see Vanessa, don’t expect her to be ready before lunch. I’m sure she knows I’m saying that with love and hope she can find the funny side.
Vanessa is always late, to go anywhere, every time but that’s ok. I know what she has to deal with, before she walks out of the house each day, it’s not easy and quite frankly, I’m not sure I could do it.
So, if you can – please dig deep and make a donation to this worthwhile cause, Vanessa (& I) truly appreciate any support you can provide.