Huntington's Client Profile: Haylee
The team at Huntington’s Victoria has known Haylee since 2009 following her diagnosis of HD. Haylee is a confident, lovely young lady who never allows her diagnosis to stop her from enjoying life. Her mother Stephanie is the embodiment of a strong, committed and loving mother despite the struggles of her role as carer and the impact of HD on the family unit.
How and when did you first become aware of Huntington’s disease?
My first experience with HD was when my Pop had it when I was 15 or 16.
What would you like people to know about HD?
It’s an extremely hard condition to live with.
How has Huntington’s Victoria helped you so far?
Huntington’s Victoria helps me to be able and go out and do things like go to the Grand Prix, the Australian Open, the movies and the zoo. HV also sets me up with a lot of really nice carers.
What is one thing you can’t live without?
My mum and Edward from Twilight.
What is something people might not know about you?
I may come across as quiet but I can be quite cheeky!
Is there anything you want to say to those impacted by HD?
The most important thing to remember is that life doesn’t stop. Keep on living and whatever happens, happens.
Over the last several years, the Case Management Program at Huntington’s Victoria has supported Haylee and her family in a number of ways. By linking Haylee to appropriate local health and support services, HV has helped to ensure a safe and quality life at home and in the community as well as supported Stephanie in her caring role.
One of the major challenges HV has encountered in working with Haylee has been seeking government funding through an Individual Support Package (ISP). The purpose of these packages is to fund activities that help the client maintain independence, strengthen family relationships and participate in the community. When an ISP package is not allocated immediately, Huntington’s Victoria is able to provide funds for personal care and domestic supports in the meantime. The funds for these supports come from our amazing donors and fundraisers who truly make a difference in the lives of those affected by HD. In this particular case, their donations enabled Haylee to live at home with her family much longer and prevented early entry into residential care.
The subsequent allocation of government funding enabled Haylee to safely access the community with a support worker and enjoy activities and events appropriate for young people. The funding also provided Stephanie with 1:1 personal and domestic supports, enabling her to have regular respite and maintain her part-time employment as well as manage other family responsibilities.
We take this opportunity to thank clients who share their stories with us.
If you, or someone you know would like to feature please call the office on (03) 9818 6333 or send us a message.