Sad News - June 2009
This week, we lost a young man with Machado Joseph Disease. He was only 38. He lived in Angurugu, and was that very special man who went on his Road Adventure with Bryan Massey from Darwin to Brisbane last year.
For anyone who felt the warmth of that amazing smile, he was a motivating force for all of us in the fight against MJD.
With the support of the Anidilyakwa Land Council and the federal Department of Families, Community Services and Indigenous Affairs in helping us get the MJD Foundation up and running, we were able to improve the short life he had in the following ways throughout the last year:
- We purchased an electric hospital bed for his bedroom at home last year
- He went on an amazing trip with Bryan Massey driving from Darwin to Brisbane, swimming with Dolphins and enjoyed every minute
- He received small gifts such as DVD's and sunglasses
- He participated in Sleep Studies which enabled him and his family to get some better nights of sleep
- He willingly worked with our Sleep and Swallowing researchers from Uni of QLD in helping them scope out their research which will commence this coming September
- We supplemented the carer support provided by the East Arnhem Shire - Flexible Aged Care Facility, by employing a carer to visit his home on Saturday and Sunday each weekend
- We flew our volunteer (Bryan Massey) up to be by his bedside in Darwin after he was flown there several weeks ago, and he remained with him and his family until his passing
- We worked closely with the Angurugu Clinic sharing information and coordinating our joint efforts as defined by the MOU with the NT DHF
- When his family wanted him to fly home to finish up, he was able to be flown back to Angurugu, and most importantly, having his hospital bed meant that he could be supported and cared for in his last day in his home
- We were able to fund his mother's return from Darwin (as she was also sick in hospital) to be with him
- We have purchased collapsible travel wheelchairs (perfect for air travel in remote locations) which will be used for more easily transporting others with MJD to his funeral
Losing him has made us even more determined to make an impact to help others with the disease now, and those who will inherit it in the future.
Our current numbers confirm that the NT Indigenous Australian population has, by far, the highest prevalence of MJD in the world.
We have 4 new cases in Angurugu alone in the last few months, let alone the cases that have recently emerged in Ngukurr, Birary Birany and Papunya.
Thank you again for your support, and we will need this ongoing support in the future.