The Film is about.....
Our family and others living with their children who experience life with conditions associated with anomalies on the 18th Chromosome and those who have touched our lives. The stories of people born with genetic difference (still commonly known as "abnormalities") are still for the most part defined by medical stories - those that use words such as viability, high risk, low functioning.... uplifting kind of language like that. When my daughter Allycia was diagnosed I couldn't see what the microscope saw - call me a doubting Thomas, but all I could see was my daughter. In the absence of any medical story I could identify with ( we were told there were only a handful of people in Australia with the condition) I began my search for other stories about disability and difference. Sadly the television programs addressing disability seemed to still subscribe to the idea that unless you are a disability super star life was an cesspool of sadness - we certainly weren't superstars and Allycia brought joy and delight to our lives. Something was definitely wrong with this picture and the desire to bring a different kind of normal to the screen was borne.
In bringing this still largely unknown condition to the screen, my intent has been to describe in easy to understand terms the many ways in which these anomalies affect those born with them and to celebrate the flourishing Chromosome 18 community that spans across many nations across the world.
Filmed over five years in Australia and the United States, families and individuals living with these rare conditions talk openly and honestly about their experiences with some surprising revelations. It has taken quite some time to bring the film to this point and it is the result of many, many hours of a dedicated few who have supported the project and ensured that its intent is now realised - to those who have taken the journey - thank you.
Working with animator Paul Van Opdenbosch in crafting his stunning animations, we wanted to re-create the microscopic world of our genes that has become a fascination the world over as we collectively seek to understand the nature of our DNA. Filmmakers Tfer Mader and Nicole Bourke have taken this ride with us, for what has been a very long time and their talents have brought the work to completion .
Who's who in 18q-?
Well first of all there would be Allycia, her big brother Adam and her sister Kristina and then there would be that Mother of theirs who is quite difficult to manage at times, but they do say we choose our parents??!!?? That could be debatable. Allycia was born in 1995 when this internet "thing" was in its infancy when we compare what is now available to what was "there" back then. Funny thing... if we look back maybe just 30 years prior to Allycia's birth, babies born with serious genetic anomalies (which could in no way be identified in the manner they are today by the way) were generally confined to institutions because it was apparent that the government of the day could take better care of them then their families and communities. It's good to know that we are an evolving species and always open to learning new things.
So who's a little bit famous then?
Well that would be one of the most amazing photographers around right now.... Rick Guidotti. Rick Guidotti, of Positive Exposure not only features in our film but he is responsible for many of the stills featured in the work. He has become somewhat of a "permanent fixture" at the annual Chromosome 18 Conferences held in the United States and brings with him, his unique lens from which to view "beauty". See the trailer of Rick's new work,
On Beauty, and take a look at his presentation at TEDx Talks. You can also see him in our film by the way.
How About Some of Our Chromosome 18 Families then.....
The Cody Crew - Dr Jannine Cody, Elizabeth and Catherine Cody.
Well Jannine is almost as famous as Rick, and we think this link may give some indication of how formidable this woman is, and well just don't get us started on those daughters of hers...... see them for yourselves in the film.
Irene and Scott, Kaitland, Brianne and Steven Lammers (and Irene's Mum and Dad - they all live in Canada).
Well what do you do when not one, but two of your babies arrive with a chromosome 18 anomaly ? You buckle up for an amazing ride and contact Irene and Scott for some navigational advice.
Lucinda and her Mum
You'll find these amazing women in Melbourne and they are still to meet anyone in their own city with a chromosome 18 anomaly. Lucinda challenges the terminology we associate with chromosome 18 and really does not like "that word" (it's abnormality).
Mmmmmmm.................so what about love?
Martin Bridge, Kathryn Mckerracher and their parents. Martin and Kathryn met at a Chromosome 18 conference, and in their words, it was "love at first sight". Martin and Kathryn apparently chose right when they were thinking about parents, because they have been supported and nurtured by four unique individuals who continually validate and respect their children's right to love and happiness. Read about some of their story here .
Our other friends featured in the film
Anne Greer is a disability activist and mother of two young adults living with disability who features in our film. She inspired me to "flourish" in my new life with disability rather than "survive". She is part of an organisation based in Northern Queensland - Community Connection Inc.
Dr Dan Hale Dr Dan, as Allycia affectionately refers to him, is SMART but don't just take our word for it click here and see the body of work he has contributed! He is also a nice guy by the way. Dr Dan outlines for us in the film, the challenges that medical practitioners face when confronted with rare conditions and challenges us to maybe try to get to know someone who may seem a little different. Dr Dan, together with Dr Jannine have created a series of podcasts you may like to listen too.
Dr Peter Smith
Dr Pete was the one and only medical practitioner who has worked with Allycia who was comfortable with contributing to our film. Dr Pete demonstrates in our film what we like to call "best practice". He is an accomplished researcher as well as a caring, intelligent person who has treated our community with respect and dignity.