Stories

Eddie

My name is Eddie. I was born profoundly deaf in 1965 and I have Usher Syndrome which has also resulted in me having impaired vision since the age of 20. A condition called Retina Pigmentosa associated with Usher Syndrome means the light sensitive tissue at the back of my eyes is slowly degenerating, resulting in loss of sight.

I am a fan of Holden HQ 1971-74. I have owned Holden cars three times –  HQ Statesman, Kingswood and Premier. I am a member of the Holden Car Club of WA.

Unfortunately, recently I have had to give up driving which is difficult as a car enthusiast. I went down to see my eye doctor and he told me my vision had become too restricted and I had to stop driving. I was quite disappointed but I guess that’s how things have to be.

I love old Muscle and Classic cars such as Holdens, Fords, Valiants and American cars. I have been to car shows all around Western Australia and also the Summernats Car Festival in Canberra.

So, while I have accepted that as a matter of safety I can no longer drive, I kept my 1979 Holden Statesman because I want to pass it down to my children and for their children for future generations to come.

I love 1970’s style true Levi jeans, Desert Boots, T-shirt and cardigan coat (I have kept this particular cardigan for 34 years as seen in my photo top right). This is my own Holden 1979 HZ Statesman SL/E (Special Limited Edition) I have had it for 8 years and I also have lots of Holden memorabilia in my garage.

The Senses Foundation run the Usher Syndrome Support Group, which provides support to people who have Ushers Syndrome, their families, carers and friends. I have been a member of the Senses Foundation since 2006. I first met Robin Hamilton (formerly Senses) and also Karen Wickham (Senses). I am learning and involved through Senses social activities, events, workshops and committees. I now support Senses with the Usher Syndrome Support Group. I dream of raising money to help others with Usher Syndrome as this is a good way to help them.

This year, 2012, is the first Deafblind Camp in Western Australia. I am a member of the planning committee along with a few other people from Senses. If this year’s WA Deafblind Camp is a success, I hope there will be others in the future, and hope to still be part of the committee. One of the reasons I like being part of the committee is because I like to help, support and give my ideas and be as supportive as I can, helping out with the people who currently have Ushers. I am positive about my ideas.

I dream of doing some fundraising, by taking part in the Defying Adversity adventure desert trek. My team and I will walk 1,850km from Halls Creek to Wiluna in April 2014 to raise money for the WA Usher Syndrome Support Group.

I think raising money for the group is a worthy cause, that would go towards providing information, education, recreational opportunities and a support network for people with Usher Syndrome.

It can be very hard dealing with Usher Syndrome when it is difficult to communicate in verbal discussions. I feel very lucky though to have my beautiful wife Janine, who is deaf as well, and my three wonderful children Benjamin (20), Harley (17) and Kristen-Lee (15), who all have hearing. All my children can all use Auslan to communicate with my wife and I.

Since birth we taught the children to sign with their hands, and they are amazing at it. It’s just wonderful to see how your children grow up using it every day, I am proud to say that I am grateful for what I have and I hope for the best in the future.

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