Ngeniyerriya – The Story of Machado-Joseph Disease on Groote Eylandt
‘Both sisters, Rose and Roseanne, stayed with me. I didn’t want other families to help the wrong way. Nieces and nephews, brothers and sisters — I helped them all.’ — Gayangwa Lalara Gayangwa’s nine siblings passed away from complications relating to Machado-Joseph Disease. Her and her sister, Gwen, are the only two remaining siblings. Today, many of their nieces, nephews and their children have MJD, and there are many more at risk of having the disease. On Groote Eylandt alone, there are now over 200 people at risk of having the disease — that is, people who are direct descendants of someone that was affected by MJD. Despite experiencing extraordinary sadness in her lifetime, Gayangwa has never given up hope, and in 2008, the MJD Foundation was born. Co-founders Gayangwa Lalara, Libby Massey and Nadia Lindop launched the Foundation on Groote Eylandt in 2008. The lives of those living with MJD on Groote Eylandt (and beyond) were changed. Gayangwa’s promise to her people that day was to continue to support them; and for herself, she was happy that she was no longer isolated and alone. The MJD Foundation’s service model are driven by the wants and needs of Aboriginal people living with MJD and their families — not externally decided. ‘Ngeniyerriya’ — a word in Anindilyakwa (the language of Groote Eylandt) used to express empathy towards someone that is experiencing sadness, difficulty or death — is the title of MJDF’s recently released short book that captures the story of Machado-Joseph Disease on Groote Eylandt.
The collection of stories within this book offer an insight into the lives of Groote Eylandters affected by MJD, their families, friends, carers and supporters, both before and after the MJD Foundation was established on Groote Eylandt in 2008. It is also a dedication to Gayangwa and Gwen’s families affected by MJD that have already gone before us, so we can remember them and their stories – as well as their relentless efforts to fight and advocate for this disease for future generations. Jenny Baird, wife of one of Gayangwa’s brothers who had MJD, said about the book: “It has been a cathartic experience to write of my family’s experiences in these MJD stories, and it has been done with tears of both joy and sadness. Joy that I had the privilege to know these people, and sadness that they never got to see the end result of their struggle. To see full recognition and support given for MJD, and know that their struggle had not been in vain. We have learnt from their lives, and today the support and care given is first class, in all areas of care.” At the invitation of Hon Selena Uibo, the MJD Foundation family – including staff, clients, families, support workers, volunteers, and board members — were excited to launch the book at Parliament House in the NT in June, 2021. ‘Ngeniyerria – the History of MJD on Groote Eylandt’ is on sale for $39.00, including postage.
To purchase your copy of the book, email Morag Maclennan on morag.maclennan@mjd.org.au
