Warning: Graphic images.
I was introduced to the world of EB in 2000 when my daughter Eliza was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
My husband and I started the journey of being first time parents in a state of sadness, desperation, frustration and a sense of being constantly overwhelmed. In the years to come we welcomed our second child into the family, and along with the support of DEBRA Australia, family and friends, and support services we have lead a very fulfilling but restricted life which tragically came crashing down around us two weeks before Christmas last year, on December 12, 2017.
EB takes the utmost love, dedication and determination (and a sense of humour doesn’t go astray) just to name a few attributes to deal with new challenges that EB presents on a daily basis.
Everyone meets challenges in life – some things we have little or no control over – but it is how you deal with the challenges that counts. When living with EB, it’s important to make each day count!
Imagine being given a gift… A gift of life, you are so excited to become a first time mother and all you can wish for is that your child arrives safely and as that time gets closer you can’t wait to hold them.
Who would have thought a mother’s touch would cause their baby pain? This was the reality I was hit with when our beautiful baby Eliza arrived on January 28, 2000. As soon as I held her in my arms it was very apparent that there was something wrong. She was born with large raw areas extending over her feet, right leg & knee, her hands and her mouth. She was born at a local private hospital and was immediately transferred to the Royal Children’s Hospital and after a terrifying and long 2 weeks, she was diagnosed RDEB. I still remember the empty feeling that took over my whole body.
Eliza was going to be affected from a debilitating medical condition that became worse with life. It was one of the more severe types of EB and referred to as ‘the worst disease you’ve never heard of’.
Doctors advised Eliza would be in constant pain, she required morning & evening dressing changes including salt & bleach baths which took approximately three hours, three times a week. Her fingers and toes would web and form strictures, the skin in her throat would become so tight from scar tissue that she wouldn’t be able to eat normal food, or at desperate times even be able to swallow her own saliva. Eliza would suffer from corneal abrasions which means her eyes would be closed for 3-5 days at a time, in a darkened room due to a tear on her cornea. Her mobility would be affected, she would require bandages and dressings all over her body every day of her life and she wouldn’t be able to wear normal clothes or undergarments because even the seams on the inside of the clothes would blister her skin. It was going to change our lives forever and it did.