Skip to content Skip to menu

Elle's Story

Elle's Story

Hi, my name is Elle. I was 14 when my Huntington’s disease journey started and it still impacts me today. It’s been years but I remember clearly the day my life changed forever.

I was visiting family over east when I got the call. My mum called me crying so hard that I could barely understand her. “Nanna tested positive, she has Huntington’s disease,” she sobbed down the phone. I barely had a grasp on what the disease was and have since learnt it’s like having Parkinson’s, Alzheimer’s and Motor Neurone Disease all at the same time.

Knowing my Nanna had the disease impacted me more than you’d ever know as she had been my primary carer for more than a decade. She knew me better than just about anyone else. She was always a stable and reliable person I could lean on. But I never thought I’d see her suffer through something like this, I was devastated and I felt lonelier than I ever had in my life.

From that moment on my life changed forever. As the illness progressed over the years it became difficult to be around Nanna. It was so scary to see her deteriorating so rapidly, with such difficulty moving and even being able to talk.

Christmas is a particularly difficult time for me as there are constant reminders of happy families having the perfect Christmas and I know that I will never be able to hang out with Nanna the way we used to. This makes life pretty unbearable at this time of year. And I know it’s worse for those who have lost loved ones. 

My mental health was also affected. I had so many questions. Who was going to look after Nanna? Did I have the illness (there was a 50 per cent chance I did). If I did have it, what was I going to do, how would my life go on? I started to panic and I thought my world was ending. I felt all alone.

During this time, I stopped attending classes at school and was considering dropping out – no one understood where I was coming from and what was the point anyway? I isolated myself from others and kept to myself. I felt alone in this and I didn't want to burden other kids around me with troubles far too real for people of my age.

I really was at a low point and then a social worker put me in touch with the youth support services at Huntington’s WA. It helped to find out that I wasn’t the only one out there going through this. The more support programs I got involved with, the easier it got to deal with and to talk about it. I’ve met so many people just like me who helped me with what I was going through.

I felt like I had another family who got me – I felt connected, safe and loved. Huntington’s WA have been a lifeline for me as I now know I’m not alone.

I’ve loved being able to take my mind off of Huntington’s and enjoy everyday things like roller skating, going out to the movies, spending time at Adventure World and hanging out with friends who just get you. All these things have helped me to become more resilient.

And with counselling, being with others in the same boat and learning to have some fun again, I got back on track with my schooling. I ended up staying back a year. But this year I’m proud to say that I graduated from school. I don’t think I would have been able to do it without the services provided by Huntington’s WA.

They’ve not only be there for me, but they’ve provided so many vital services for my Nanna. We have help to cook and clean, Nanna can get to where she needs to go with free taxi services and she is living the best life she can thanks to Huntington’s WA.

I can honestly say I wouldn’t be the person I am today without their wonderful support.

- Elle 

Elle's journey is just one of the many unique stories within the Huntington's WA community. To provide the support that Elle and her Nanna receive, Huntington's WA needs your help. Our Festive Appeal for 2019 has begun in which we are asking donations to provide youth services for people just like Elle. Every donation counts, no matter how small, in supporting our community.

Head over to our Givenow page to donate