"I was experiencing feelings I couldn't put into words."

December 01, 2021

Hailey had a stroke when she was six years old, more than 20 years ago. It was a long process to get to a diagnosis, and Hailey felt afraid and confused about what was happening.

“I was experiencing feelings I couldn’t put into words. I was really scared.”

Some of the effects she had to deal with included aphasia and fatigue, as well as balance issues.

“At first I couldn’t understand what had happened to me. At six, I didn’t know what my brain did or even what a stroke was” she says.

“There was a time where I was quite ashamed of what had happened. I became frustrated and annoyed with myself.”

To make matters worse, the paediatric system at the time did not cater for stroke, so most of her treatment was through the adult health system. “I remember asking mum, ‘Where are the other kids like me?’ and she couldn’t tell me. She didn’t know of anyone else who had experienced childhood stroke. It made me feel isolated” says Hailey.

Finding out about Heads Together in her home state of Victoria changed things dramatically for Hailey. Heads Together runs camps for families who have a child with acquired brain injury so they can connect with others and build friendships. “It’s a really good place just to be yourself and not have to deal with the stigma that you feel in the wider community” Hailey says.

“You also get to have that sounding board, that advice network. You can focus on the things you’re good at and the things you’d like to improve on. You need that support because as a young person, thinking about your goals can be quite overwhelming.”

Now, Hailey has a partner and a step-son, and she works as a part-time carer for young people with mental health issues and acquired brain injury.

She also does a lot of work in her spare time raising awareness about brain injury and stroke, as well as volunteering for Heads Together. “When I was growing up, I felt very alone, and that's something that I don't want anyone else to experience,” she says.

“I just wanted to give something back, because camp gave me such a great understanding of what had happened to me, who I was and what I could achieve. That community has such a positive outlook on life. I wanted to give kids the same understanding, and the same strength.”

“Just know that you're not alone, there are other people out there, especially with Facebook and the support groups.”

Hailey’s family put her at the centre of all the decisions that they made as a family. “My mum always pushed for the things I cared about at the time. So learning wasn’t the biggest thing about me going back to school. It was more about making friends and integrating with the other kids. And we worked on that game plan together.”

At the time of her stroke, it was thought that Hailey might not speak again. She has come a long way thanks to the support of her family and her determination to recover.

“You never know what you can achieve. Just because one medical professional says, ‘Maybe that’s not the best idea’ doesn't mean you can't make it a long-term goal. You’ll be surprised at how much your child will push if they set the goals.”

“My parents never said ‘You can’t do that’. They just said it might take a bit longer to get there. So that’s the sort of culture I grew up in in my family. I wasn’t treated differently to my siblings, which really helped me not to question myself when learning new things,” says Hailey.

“It’s just a matter of learning to accept that these are the cards that you’ve been dealt, and you’ve got to figure a way around the issues you face, and through time that’s what I did. I can do everything anyone else can do. I just have a different way of going about it.”