By Joe Roberts @jrobertsjourno
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Videographer / director: Dean Swindell
Producer: Joe Roberts, Ruby Coote
Editor: Sonia Estal
Dean Clifford, now 38, has become the oldest living survivor in the world of the most serious form of Epidermolysis Bullosa
The genetic condition causes the Queensland-native to have incredibly fragile skin, which blisters frequently and takes much longer than usual to heal itself.
Despite this, Dean has transformed himself from a physically weak and sick child to a practiced bodybuilder with a successful motivational speaking business.
Dean, who also works as Business and Marketing Officer for a car dealership, told Barcroft TV: “The way I describe it to people I meet is my skin is basically as strong as tissue paper or strong as butterfly wings.
“So the slightest little movement will create a blister or a tear in my skin that will become ulcerated and become a nightmare to deal with.
“it’s sort of equivalent to living with third degree burns every single day.”
Facing these incredible circumstances head-on, Dean has refused to let the condition bring him down, always adhering to his personal philosophy: “never admit defeat.”
He continued: “If I stay true to myself, I stay grounded, and I stay true to what’s important to me then I can always see a positive spin to just about anything, and I use it all as a learning experience to better myself.”
Dean’s parents Jenny and Peter Clifford began noticing blisters appearing on their son soon after his birth, and assumed he was allergic to the brand of baby wash they were using.
But Dean’s condition became increasingly severe with more blisters forming in the following months – eventually leading doctors to diagnose him with EB, commonly known as Cotton Wool Babies, at 18 months old.
Jenny said: “The doctors painted a very bleak picture. We thought maybe two years, three years we’d have.
“We didn’t really think we would have him for a long time, but we were certainly willing to take up the challenge and keep him as well as we possibly could.”
Dean says his upbringing was incredibly difficult at times, with other children often being too scared to be around him due to the severity of his facial blisters.
“I always knew that I was very different,” he said. “I knew by people in the community being scared to be around me, or when I’d go to the cities or go outside of my familiar environment the community would be scared to be around me.”
Even now, Dean must undergo a gruelling three-and-a-half-hour routine every morning, which involves soaking his bandages off in the bath, before treating any new skin issues and re-applying the bandages.
Simple tasks such as typing on keyboards or handshakes can cause Dean’s skin to weaken and blister, meaning he and his mum are constantly treating new skin problems during this protracted morning preparation.
None of this has stopped the 38-year-old from confronting his almost-constant pain to become a weightlifting marvel through diligent training and perseverance.
It began back in 2006 when Dean and his close friend and New Zealand All Black, Brad Thorn, began thinking of ways for Dean to improve his physical health.
Weightlifting was the activity of choice, with Dean starting by lifting just the bar, before adding more weight and wowing his friends and family by bench-pressing 60 kilos by the end of his first session.
Jenny recalled when he first started his new hobby: “When Dean stared weight lifting it was a little bit like ‘why put yourself under this pressure?’ But when Dean wants to do something, he’ll do it.
“It has had consequences for his hands. But it’s also made him who he is now, and it’s a huge achievement. Who would have ever thought this little frail young man would become the man he is today.”
Weight training is a practice Dean has kept up, becoming strong enough to lift weights of up to 150 kilos, as well as perform push-ups, sit-ups, and other exercises many others without his debilitating condition would find difficult.
Dean said: “There’s nobody that I am aware of that is lifting the kind of weights that I lift… and there’s not many people in the world, whether they’ve got EB or they have got a normal healthy body, that is able to train with me on a level or keep up with me.”
Friend, Aaron Whitchurch, who helps Dean train, added: “I think weightlifting means quite a bit to Dean. It’s given him a massive focus and drive in his life. I just think it’s amazing what he has been able to do to”
This commitment to overcoming the odds has equipped Dean with the knowledge and experience needed to inspire others through his motivational speaking events.
The bodybuilder has become a fixture on the speech circuit, sharing his personal philosophy at numerous Australian companies and organisations, including primary schools, the Australian Federal Police, and even in one-on-one meetings with government departments and Prime Ministers.
“The message I’m always trying to spread is basically to be true to yourself and find the thing that makes your life special,” he explained.
“Whether it’s weightlifting or sharing my unique life story, or whether it’s trying to inspire the next generation in the community.
“People can hopefully look past my skin condition to see somebody pretty amazing and achieving some phenomenal things in his own life.”
These appearances have naturally brought Dean some significant notoriety, which recently culminated in him being selected as a runner in the Queens Baton Relay in the upcoming 2018 Commonwealth Games.
Dean, who previously carried the Olympic torch through Kingaroy in 2000, said: “Having achieved so much in these 18 years, since the 2000 Olympic torch run, I think it will be a bit more of an emotional time and sort of a reflecting time."
It’s an accomplishment that obviously means a lot to Dean, who says that despite his work to spread awareness he still finds some people react strangely to him when he’s out in public.
“Sometimes people will stop me in the street and pray with me, or come up and offer a miracle medical treatment that they have just read about on the internet,” he said.
“Kids to this day are still quite scared and concerned, which is fine, I can deal with kids and get them to understand pretty quickly, and I can deal with adults, and get adults to understand pretty quickly.
“If people want to get to know the person behind the skin condition then I’m more than happy to share my story.”
Having accomplished so many unexpected things, Dean now has his sights set on maintaining his health and continuing to defy his original prognosis.
He said: “It’s been an amazing thing to be thinking long term and thinking about the prospect of living independently and sort of setting myself up for what could end up being a very long life.
“Which would be amazing to consider for somebody with a life expectancy of no more than two to five years of age.”