Meet our WA State Rep

Hi everyone,

My name is Fern and I am the President and current WA State Representative for the OI Society of Australia.  I want to let you know that you aren’t alone here in WA and my objective over the next few years is to understand who is out there in the OI community and how we can support each other here in WA.

A little about me…

Until 2012 I did not even know what OI was, however in June 2012 our daughter Claire (8 yo) was diagnosed with OI and during 2012 she endured 5 major breaks.

Upon receiving the diagnosis we were in shock and disbelief however it also helped explain a number of things including other breaks she had earlier in her childhood and of course the blue sclera that I had always noticed but had never understood the importance.  One of the biggest things I felt being in WA was isolated and I found myself looking for others who had OI or had children with OI.  I didn’t know whether I should wrap our beautiful girl up in cotton wool or keep her active, should I tell the school, did she need an aide, should I buy a wheel chair.  We had loads and loads of questions, including what does this mean for our family and other child?

As we all do now, I searched the internet and asked the doctors (endocrinologist, geneticists, orthopaedic surgeons, GP’s and physiotherapists) but didn’t know what to ask most of the time.  Generally the questions came to me at night and in no specific order or association and were probably not of a medical nature anyway.

One thing I did find on the internet was the OI Society of Australia and I contacted them and became a member for a very minimal cost.  In doing this I could access the newsletters and some papers written by the experts in the field, I also got to speak with people who had walked in my shoes or were walking or wheeling in Claire’s shoes.
As a family we were also fortunate to attend the OI Society of Australia’s conference which is held every two years and is an amazing two and a half day event which brings together the experts in the fields associated with OI and people with OI and their families.  It was only at this conference that I felt finally I wasn’t alone – the conference provided opportunities for all of our family.  Our son, who doesn’t have OI got to hang out with other kids his age in a similar situation and talk with them about what a pain it is to have a sister always breaking and always being in hospital.  There were sessions for mothers, fathers and OI adults with topic ranging from siblings, hearing, dental, bisphosphonate treatment, genetic mapping and much more.  The kids had a ball meeting other kids like them and the society had volunteers run a kids club during the conference – all who have been around children with OI for a number of years.  Keep an eye out on the events page for the next conference.

It was a comfort to me and has spurred me to take on the Western Australian State Representative for the OI Society and also to take a position on the OI Society’s board.  I am very keen to make sure that people in Australia have access to information and more importantly to association and support from each other.  At a state level we hold our annual Wishbone Day picnic and from time to time hold morning teas and other events.

In addition to this, I would love to work with others in WA to see if we can generate funds through either grants or other fundraising opportunities to ensure that we provide support for families to attend the conferences and perhaps even have a mini-conference here in Perth with our very own specialists.

If you would like to be part of this group please get in contact with me as I would love to meet you and help you connect up with our group. Also if you know others who may like to be part of the society please pass on my details or this email to them as we have limited access to knowing who has OI in WA.  My email address is: wa@oiaustralia.org.au