Obstacles don’t define us, but the way we tackle them can. I haven’t let EB stop me from living my life. I want to be proof to others that they can overcome adversity to achieve their hopes, dreams and goals and do pretty much anything they put their mind to. I like to think that being diagnosed with EB just means I have always been unique. After all, even my case of EB is special. I have been diagnosed with Junctional EB and LOC which is a fairly rare subtype of Junctional EB. What makes it unique is that the airways are severely affected. My case is considered extremely rare in the sense that my EB doesn’t follow the traditional junctional symptoms, my skin is fairly good on the scale of EB, but my trachea and eyes are badly damaged.
From the beginning, doctors knew that something wasn’t quite right. I struggled to feed, had a hoarse voice when I cried and a sore on my thumb that couldn’t be explained. By 6 weeks of age there were further signs and complications – my body wasn’t developing like it should, things like my fingernails didn’t form. Back then, there wasn’t a lot of knowledge or specialists in Australia concerning EB. Coming from Newcastle, we had to come down to the Sydney Children’s Hospital for care and it wasn’t until 9 months old that I was officially diagnosed with EB.
Sadly, most people with my form of EB have a life span of 1-2 years, but I really believe you need to believe in yourself – have some resilience, determination and strength. It has worked for me so far – I have just celebrated my 21st birthday!
Nothing stops me. I completed my HSC at a mainstream high school just like the other kids (with the assistance of a permanent teacher’s aide). After I finished high school, I enrolled in business administration at TAFE and I really enjoy it. I love the book work and numbers side of things and really got a kick out of attending the physical classes at the TAFE campus but COVID has me studying from home now. I’m not going to lie, I’m not so keen on that at the moment and can’t wait to get back to the classroom face to face.
I want people to know that I am just like any other guy my age. I am an avid gamer and it is not uncommon for Mum to wander down the hallway at 2am and find me still awake and on the PC playing! I am completely hooked on the game Destiny at the moment and I find that gaming keeps my schedule busy. It makes me think outside the box, stay committed and be determined. Mum laughs when I sell my obsession with gaming to her like that – a checklist of the life skills it is helping me with. She nods her head in agreeance though.
The coolest thing I managed to do in terms of my independence was getting my licence! I think it freaked Mum out to start with, but I convinced myself and everybody else I was determined I wasn’t going to miss out on anything and being able to drive is definitely a testament to that. I want people to see I am not a fragile and weak person. People sometimes look at me with pity and think I’m unwell, I’m not and I don’t let my EB diagnosis automatically put that label on me.
Despite having to have a tracheostomy at 2, a permanent catheter at 4 and a feeding tube straight into my stomach I try to take it all in my stride. Even with Mum’s help, my morning routine can take us the better part of 2 hours to dress the friction wounds on my skin, administer medications and nebuliser treatment before we can even consider leaving the house and this is probably the biggest issue we face. Does it stop us? Not at all! It just means everything takes a little more planning.
Even though we have to be conscious of things like air quality, nature brings out the best in me, it gives me this passion for life when I’m out there amongst it. It might have something to do with the fact that I love animals as well. We have 2 rescue dogs, Meeko who is 5 and Fitz who is 13 and we can’t forget our parrot Jellybean.
I haven’t let EB prevent me from seeing the world either. I have been to Ibiza, Spain, New Zealand (4 times!) and we took a cruise to the Pacific Islands last November to celebrate my 21st birthday. I have always had a love for water and used to fish a lot when I was younger.
The thing is, people need to know I will push through the pain. If I want something, I’ll just do it and try to have fun along the way. I want to show people that despite what they think they see, I am strong. I am lucky to have an amazing family, a good circle of mates and we are blessed to have the support of NDIS and DEBRA for the practical assistance we need. EB isn’t going to stop me experiencing life and making sure I get to do it with a lot of excitement and joy along the way.
