Sean's Story

I was sixteen when my father told me that he had Huntington's Disease (HD). I don't remember feeling upset by the news. I didn't know the devastating effect that HD would have on my family. A person with HD may live for 15 to 25 years after developing their first symptoms, but the disease is invariably fatal. Dad died at the age of 64. The average person with HD will die in their 50s. The first symptom my father noticed was the involuntarily movement of his tongue. As the disease took hold, he displayed symptoms such as depression, mood swings, clumsiness, irrationality and involuntary movements of his arms legs. Eventually people with HD lose the ability to walk, talk and swallow.

Mum was deeply affected; not just for Dad but what it might mean for her four young children. HD affects families, not just individuals. Each child of a person with HD has a 50/50 chance of inheriting the faulty Huntington gene. Everyone who carries the gene will develop the disease at some stage in their life.

I grew up in the Melbourne suburb of South Oakleigh. Sport was a focus for all the family. My father lived for Brighton Union, his cricket team. The extended Egan family was extremely tight knit. We spent a lot of time at our grandparent's home. Dad's father had HD but we always thought he was just sick from the war. The word HD was never mentioned; it was kind of taboo.

My father remained a positive person throughout his struggle. He was determined not to let HD affect his life too much. He continued to drive, play cricket and work for as long as he could. Even when it became too difficult for him to drive he would catch public transport to manage the First Eleven at his beloved cricket club.

When my father was diagnosed there was no test to find out whether you had the Huntington gene, so you didn't know until you started displaying symptoms. I decided to have the test in 2002 because I was thinking about HD too often. Every night when I went to bed I would be wondering about HD. It had even permeated my teaching; I would occasionally be talking to a class and suddenly the thought of having HD would enter my mind. This didn't happen often but it was enough to make me think, 'If I am going to worry about something, I should make sure that is actually worth worrying about.'

I was probably also influenced by the fact that my brother, Brendan and one of my sisters, Kristine had already had the test. They were both gene negative. My test result was positive. My youngest sister Kylie also tested positive a year later. I was unbelievably disappointed but in some perverse way it was a relief to find out. At least I didn't have to think to myself 30 - 40 times a day 'Have I got it or haven't I?'

At present I don't have any symptoms, but I do carry the HD gene. This means that at unless a cure is found I will develop the disease at some stage in my life. I think becoming gene positive made me think about getting more out of life and it definitely caused an increase in the amount of exercise I did. There is some scientific evidence that being active, can delay the onset of the disease.

While I was riding more often and participating in events such as The Great Vic Bike Ride and Round the Bay in a Day, it was not until Dad died that I got serious and decided it was time to do something for him.

The day after his funeral I started training furiously for the Melbourne to Warrnambool Cycling Classic; a professional, one day race of over 300km. Two weeks out from the race I purchased my new bike; a final gift from Dad.

On the day of the race I cried most of the way to the start; partly due to the daunting task that was ahead of me, and partly because I missed my dad. When I completed the race, I was immensely proud of my achievement, and realised that this was only the beginning.

I began planning a bike ride across Australia. I wanted to try to do something physically difficult to honour the courage and determination with which my father lived his life. I'm training for the ride by cycling 300 to 400 km each week (up to 600km during school holidays).

I want to show people that despite the setbacks life throws at us, we are all capable of achieving amazing things. When I think about what Dad went through, failing to complete the ride is not an option.