Curtis (17) and Luke (15) were both diagnosed with Batten Disease, a fatal disorder affecting the nervous system that causes seizures and loss of sight and motor skills.
Ms Millenbach says she runs most days to keep fit and for stress relief, but when that day in May comes about and the HBF Run for a Reason kicks off, she runs for her children.
‘Not many people know about Batten Disease because it is so rare and I hope no one has to find out about it, because I don’t want any more children to be diagnosed with it,’ she said.
‘However, raising awareness does mean the medical and research community are more likely to work together to find a cure which is very important to me.
‘It isn’t common, I hope it never is, but I think awareness also reminds people to be grateful for being healthy and helps them understand that there are lots of people out there doing it tough, its nice to know that people want to help you and offer their support and encouragement.
‘At the moment there is no cure, it is the worst news you can get, that your child is going to get worse and worse and then die.’
Registrations for the fifth HBF Run for a Reason are open. Visit www.hbfrun.com.au for more information.