Kylan’s Story
In 2018, I gave birth to beautiful baby boy.
When Kylan arrived it was clear that there was something wrong, something not quite right. He had missing skin on his forehead, nose and ear, and his right foot was fully de-gloved. He had blisters in his mouth, and he had floating fingernails.
Due to the lack of knowledge within the hospital that Kylan was born, we were transferred to Wagga Wagga Rural Referral Hospital that same day. We met with a paediatrician who was certain that Kylan had inherited Epidermolysis Bullosa. At this point, I myself nor anyone in my family had ever heard of EB before. Kylan was flown to Sydney Children’s Hospital the next day, and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa at just 3 days old.
I was 18 when I had Kylan, I had no idea about parenting what so ever which was scary enough, let alone having a baby born with ‘the worst disease you’ve never heard of’.
We spend hours each week doing either salt, bleach or vinegar baths, dressing changes, lancing blisters, administering medicine and all the rest that goes with caring for someone with EB.
DEBRA Australia work tirelessly and are extremely dedicated to raising awareness for EB, and for the impacts that it has on families just like mine.
DEBRA Australia have taken a huge financial load off my shoulders by funding dressing expenses, knee pads, electricity expenses and other essential needs for Kylan. Not only do they offer financial support but also emotional support too. Thanks to their ongoing support, families like mine know that we are never in this alone.
Emily – Mum of Kylan
Become a Regular Donor
To become a Regular Donor all you need to do is commit to donating a regular weekly, fortnightly or monthly gift so that our programs can continue and grow for families like Kylans’s.
We often hear the phrase ‘imagine a world with no pain’ wouldn’t that be wonderful? But imagination only goes so far! When you give to DEBRA Australia, you are directly impacting the lives of sick children, and together we are turning ideas into life-changing programs. Your consistent support will ensure that we can continue to make this impact on EB families across Australia ensuring that they are receiving the best possible care.