John* can’t cook dinner for his family any more. It’s too difficult to manage the many steps involved, so he simply leaves his wife Laura to do that. He used to be a great business manager, but he hasn’t been able to work for three years now. Sometimes his arm twitches, and he slurs his words. Occasionally he gets frustrated for no apparent reason.
Although his diagnosis was five years ago, John’s wife, Laura, thinks he had symptoms for a while before that. She first noticed that he started to have trouble walking properly. The disease has progressed quickly and Laura is now John’s full-time carer as well as mother to their two young children.
John is just one of the hundreds of people in Queensland living with Huntington’s Disease (HD). This terminal, genetic disease is hereditary meaning that John and Laura’s children, aged 10 and 13, are both at risk of developing HD.
There is no cure for HD, and most live no more than 10 – 25 years once symptoms onset, which include:
• Uncontrollable jerking movements (chorea)
• Difficulty walking, talking and swallowing
• Emotional volatility, behavioural and personality changes
• Impaired cognitive abilities (the capacity to plan, organise and concentrate)
Over time, John will need higher care than Laura can provide. They will need to look at care facilities in their region, which will most likely be an aged care nursing home. As much as John doesn’t want to enter somewhere for older people whilst only middle-aged, alternative age appropriate facilities simply do not exist or are not financially viable.
What will happen to this family?
Thanks to our generous donors, Huntingtons Queensland works on the front line to provide families with the services they need to manage day by day. We deliver information, education, programs and advocacy for our clients and those who work with them. Huntingtons Queensland is the only organisation providing specialised services to Queensland families.
By making a donation to our Christmas appeal, you will help John and others like him access the support and advocacy they need and deserve. Your support will go towards:
• Individual, family and carer support in person and over the phone
• Family support groups
• Respite holidays for families and carers
• Information provision to families and healthcare professionals
• Education of and assistance to service providers
• Advocating on behalf of people living with HD
• Raising awareness in the wider community of HD and its impacts
This Christmas, we ask that you give generously to the Huntingtons Queensland Christmas Appeal to help families in need of support.
*Names have been changed for client privacy.