Meet our NSW State Rep

1468602_10152410732574616_1265255508_nMy name is Lynn and I have type 1 OI as does my younger brother.  I was born in UK and after many weeks of crying and screaming I was finally diagnoses with a broken femur and at age 3 months and finally with OI.  In 1951 my parent’s immigrated to Australia with their 4 children.

Having OI meant there were many difficulties to overcome. Dr’s didn’t know much about treating it, schools didn’t want to enrol you and there were no information or support groups that we knew of.  My mother (a nurse) battled vigilantly with Dr’s to ensure my broken bones were set properly and to have me attend public school whenever possible.  At age 8 I came under the care of Dr Archibald Watts in Sydney, a marvellous Orthopaedic Surgeon from RPA.  After being put back together (often leg & arm at same time) I was sent to Strathallan Crippled Children’s Hospital in Turramurra to mend, often being there for 3 or 4 month at a time.  It was a wonderful place but lonely as I didn’t see any of my family for the entire period of my stays.  The one advantage of being there was that I was able to continue my Primary education as they had a school room attached to the hospital.

I married, had 3 beautiful children (no OI), divorced and raised my children alone.  I have 7 grandchildren (no OI) and expecting my first great grandchild.

At 15 I attended TAFE and did a business, shorthand and/typing course and from age 16 worked in administration jobs.  I joined the Dept. of Education in 1975 working in 3 Primary schools and 3 Secondary schools and was at my last Secondary school for 20 years before retiring.

I am an animal lover and over the years have had dogs, cats, birds, rabbits and frilled necked lizards.  I now only have one dog, my precious 11yr old Pug Gus.

My hobbies:  Knitting, Crocheting, Sewing, Cooking, Gardening, Reading, Genealogy.  I enjoy live concerts, theatre and listening to music.   I have always immersed myself in a community project and in 1975 became Secretary for the Lightning Ridge Pre School committee – This committee worked tirelessly to raise funds and build a preschool at Lightning Ridge.  Our regular fundraising event was Bingo every week – me of course being the Caller on many occasions.  The preschool is still operating today.  About 1981 I took on the role of Secretary for the Naval Cadet Unit committee in Grafton with the aim of building a Cadet Unit there.  TS Shropshire Cadet Unit was built and is still operating today.   The past 5 years has seen me secretary of the Tweed Valley Relay for Life committee raising money for research into cancer and for support services for our local community.

I attended my first OI Conference about 2001 in Sydney and it was mind boggling.  I had never met another person with OI until then (apart from my brother).   The next conference I attended was the 2015 OI Conference in Brisbane – it was very inspiring bringing together a wealth of information and friendships from all over Australia and I could see the valuable information and support that was being given to not only those with OI but to their families.

I have now become a Board Member and State Rep. for the OI Society because I want to promote the importance and growth of the Society and to encourage others with or without OI to assist to ensure that the hard work others have put in before us continues.   By supporting and promoting ourselves we will help to bring greater awareness to OI and let others see that even with this debilitating ailment we are valuable, intelligent people capable of leading full and meaningful lives.

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Osteogenesis imperfecta (OI) is a genetic disorder that causes a person's bones to break easily, often from little or no apparent trauma. OI is also called "brittle bone disease." OI varies in severity from person to person, ranging from a mild type to a severe type that causes death before or shortly after birth.

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