Elliot was born 16^th September 1991, just 30 minutes after his twin sister, Phoebe. It was obvious at birth that Elliot had been born with Aperts Syndrome, having the very distinctive malformations of skull, face, hands and feet of the condition.

It's fair to say that being parents for the first time, having twins, and immediately concerned for our son’s wellbeing, we very quickly sought out the nearest medical guidance for this craniofacial condition. Sadly, we were given a very sympathetic but negative outlook for Elliot’s life with the medical advice being that he would have a life of dependency on others for all his needs, and probably “would not amount to much”. These were the exact words used. The specialist also said there was not much he could do, as far as his Craniosynostosis, until he was at least 2 years of age, and sent us away to return in a couple of years.

This advice did not sit well with us, and so I set about getting a second opinion. Being 31 years ago, I was directed by Elliot’s Paediatrician to “try contacting Adelaide Children’s Hospital” and to seek advice from a person by the name of Dr (now Professor) David David. Being in another State, I called the hospital and tracked down a number for Dr David, called up and he graciously returned my call later that day. After that conversation, we were on a flight to Adelaide with 2 babies, no idea what to expect, but determined to get the best for our son.

There was one line that Dr David said to us when first meeting Elliot that has stayed with me, and that was “treat him like any other child, he will do well in life”. I am sure that today Professor David would never fully understand the profound impact that one sentence and the way he treated Elliot, and ourselves during that visit and every one after, had on both my husband and myself. It made us take an “about face” on the situation and we returned home knowing the outlook for Elliot’s life would be OK.

For the subsequent 12 years, we took Elliot to the ACH for all his craniofacial treatments, surgery, check ups etc. This was a big undertaking and Elliot endured a lot of surgeries and procedures. He took everything in his stride and definitely made it easier for us as parents during this time.

As a young child, Elliot made it very clear to all that he was going to be the master of his own destiny, often saying things like, “I’m not disabled, I don’t need looking after”. He stated what he was going to do in life, which was basically everything everyone else does “except better”. We often wondered where he got his assertive personality from! But just quietly, were so proud of him.

It was when Elliot was very young that his twin sister was diagnosed with a genetic disorder, Angelman Syndrome, which meant she would require support her entire life as she was non-verbal, intellectually and physically disabled. His support for Phoebe and assisting with her care has been a big part of his life, until he moved out of home and into his own home at 27 years of age. Well, he actually “demanded” to move out in his own loving way. He always had the dream of living in his own place and he has done so very happily, sharing his home with a good mate who is a FIFO worker and with a small amount of assistance with household tasks weekly. Elliott lives independently and loves nothing more than a night out to the nightclubs with his housemate and friends. He lives in a street where all his neighbours know him well, and he socialises with them regularly. He very frequently tells us he loves his life!

Elliot left school at the age of 18 years and has worked in the hospitality industry at a local Surf Club for the past 12 years. He reckons he’s the longest employee other than the Manager, loves the job and the workmates he has there.

Elliot has travelled interstate and abroad many times, and recently went on his second cruise, plays in the local Lawn Bowls Club fixtures weekly, (and despite his hand deformities is a good bowler), golf, plays the drums, enjoys woodwork projects, and is just a little obsessed with Taylor Swift and rugby league. He loves eating out at a good restaurant with friends or family.

We see Elliot a few times a week, and help him out where he needs us to, but other than that he is his own boss, makes his own decisions day to day, and has the autonomy to live his life just as he chooses.

Elliott has taught us, his family, his friends, far more than anyone could have imagined about how to overcome adversity. How to live your best life.

We have never limited Elliot in what we wanted him to experience in life, or what he wanted to experience. We have always assumed he would accomplish what he chose to do. The good, bad and the opportunities to do just as any other child would do. Reminds me of the statement made by Professor David many years ago – I think we lived by that from that day forwards. And those who know Elliot, know he won’t be held back by any “disability”. That’s a word he never uses when speaking about himself.

Elliot certainly often still astounds people he meets with his endeavours in life, and the way he tackles everything that comes his way. He is outgoing and tenacious and with some help along the way has learnt to build up his own personal resilience in what can be a tough world.

There is so much to be done in our communities in educating those who don’t have the pleasure and enlightenment to meet and get to know someone like Elliot, and to better understand that craniofacial conditions are just that, a different face, not a lesser person.



- Jennifer & Darcy (Mum & Dad)

THANK YOU TO ELLIOT AND HIS FAMILY FOR BEING A VOICE OF HOPE AND STRENGTH FOR THE CRANIOFACIAL COMMUNITY

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