• Loddon Herald

Questions and helping hand

By ELIZABETH BORG


ON ANZAC Day 1999, my second son David was born with the three middle fingers missing from his right hand.

How did this happen? Did I cause this? Is it hereditary? How many people are born with this? So many questions … his life laid out before me from being a baby, toddler, child, teenager to a grown man.

Will he be bullied? Will he able to do things by himself, play an instrument, meet girls? … so many more questions … mixed emotions were felt by family and friends.

After six weeks, a hand surgeon at the Royal Children’s Hospital in Melbourne diagnosed David’s condition as ‘symbrachydactyly’ (a 16-lettered word meaning mid-hand deficiency) – in Australia one in 100,000 are born with this condition.

I was keen to learn more about his condition and meet others, so joined a support group called LimbKids VicTas, however, there were no children in this group that had a hand difference. I asked the founder of this group ‘should I start a ‘hand support group’ and she said, well, that would be a great idea, so, on the October 18 2000, I established The Aussie Hands Foundation Incorporated.

The purpose of setting up Aussie Hands was to bring people together who are living with a hand difference and support them with their family and friends, share inspirational stories and provide pivotal support during milestone years (particularly from newborn to early-teen years), provide links and resources, run workshops/programs and support research initiatives to answer all those questions I had when David was born.

When David turned 16 months he had a slither of bone removed from his middle toe on his right foot which was then infused into the lower part of his thumb to improve functionality on his right hand.

Although David progressed well with his education during his kinder years to secondary school, there were times he was bullied which affected his self-esteem.

School counselling and support from family and friends helped a lot. He learnt to play the guitar in his early teens and had no problems at all meeting girls.

By the time David turned 18, he was working and living independently and, is now an Ambassador for Aussie Hands providing mentoring to younger members who are living with a hand difference.

One of the common questions asked is ‘how many people in Australia are born with a hand difference’ and ‘what causes a hand difference’?

Through many years of collaboration with the Royal Children’s Hospital in Melbourne, on May 30, 2018, the Australian Hand Difference Register was established with the Murdoch Children’s Research Institute in Melbourne and research commenced in August 2017.

The Register was established to find out how many children are born with a hand/arm difference in Australia, learn more about possible causes and risk factors, gain information to help plan services, identify possible participants for future research (iv) identify the effects of hand differences on children and decide how to best manage hand differences.

The Aussie Hands website continues to provide invaluable links/resources. Through social media (Facebook and Instagram) membership continues to grow with almost 2000 families across Australia.

If you know anyone with a hand difference in Loddon, please pass on the details below to them so they can meet others and receive support from the Aussie Hands community.


* Elizabeth Borg is a Wedderburn resident who founded Aussie Hands and was recently guest speaker at the Kooyoora Women’s Network Dinner.


How to contact Aussie Hands

Website www.aussiehands.org

Email info@aussiehands.org

The Australian Hand Difference Register www.mcri.edu.au/ahdr







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