‘My family are from Groote Eylandt in the Northern Territory. There is a sickness in our family – it is called Machado Joseph Disease (MJD). It is a bad sickness that makes our bodies stop working properly and we pass it on to our children. It is coming to the children earlier than the parents. It takes away our talking and our walking and makes everything very hard. We need help to do every little thing. It does not hurt our thinking though. We can still think very well. It makes us very sad but our family stays strong to help each other.’
MELINDA LALARA
GAYANYWA’S NIECE (WHO HAS MJD)
‘Machado Joseph Disease (MJD) is a long-term progressive neuro-degenerative condition. MJD is an inherited, autosomal-dominant disorder, meaning that each child of a person who has the defective gene has a 50 per cent chance of inheriting the disease. In addition, the mutation is typically expanded when it is passed to the next generation. This is known as an anticipation effect. This means that their disease onset is 8–10 years earlier than that of their parent, progression is accelerated, and symptoms are more severe.’
LIBBY MASSEY
DIRECTOR, RESEARCH AND COMMUNITY SERVICES, MJD FOUNDATION
‘I live in Warooko on Groote Eylandt, and this is my story to talk about the MJD. From my two sisters and down to my younger brother they have got this MJD and I was the luckiest one that didn’t have the MJD. But with my brothers I never sat next to them and never talk to them about this disease. I only say to them I wish I could help you, feed you, but our culture says I’m not allowed to sit next to my brother or even feed him, it’s our culture. I used to go and grab something for them, from someone else I would ask to help them. We do our best to help each other and we treated them as a normal person. We never treated them as disabled.’
GAYANGWA LALARA
WARNINDILYAKWA WOMAN, VICE-CHAIRPERSON, MJD FOUNDATION
