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Rachael's Story

What does this have to do with me?

For years growing up-especially in my teens, we knew there was something not quite right with my mum, things were strained, communication was hard, mum could not work, mum found it difficult to do the simplest of tasks, mum would do 'odd' things that didn't make sense, she had no friends that would visit, communication was strained, she would become "obsessed" with different things, struggled to keep the finances in order etc.

All these changes and lots of visits to every specialist under the sun, along with some family history searching, led to the final devestating diagnosis of Huntingtons Disease when I was around 18. My life as I knew it changed forever. I became mums main carer - until she progressed -losing her speech, the ability to swallow, to walk and her uncontrollable jerky movements were all taking over her body, she was moved to full time care at around the age of 45.

Mum lost her battle with Huntingtons in 2003 at the age of 50. 

Now, my beloved brother is living with HD. Suffice to say our family has a long road ahead- but we are strong.

My goal is to raise awareness for this debilitating disease, both for the individuals and their families, along much needed funds that will help go to all sorts of areas in NSW to help support families with HD and to make this invisible disease known.

Hopefully after each event, there are a few more people who now know a little more about 'HD' but there is still not enough awareness or education.We have now created HD Awareness Orange Inc as a platform for Orange & the Central West.