While waiting to see his specialist, long-time patient Robert (Bob) Hetherington and his wife Julie spotted a poster asking for help to purchase a minus 80-degree freezer.
Inspired by the opportunity to support research into some of the world’s most debilitating conditions, they decided to gift the Department the freezer.
Their generous gift was influenced by Bob’s personal experience with Mitochondrial neurogastrointestinal encephalomyopathy (MNGIE). Like Motor Neuron Disease, this extremely rare, cruel condition has no cure. MNGIE has seen Bob battle drooping eyes, muscle wastage, blindness, tingling, numbing sensations, pain in the hands and feet, and gastrointestinal issues. To top it all off, Bob has recently developed a tremor similar to Parkinson’s disease.
Thanks to the generous couple, the Neuroscience team will now be able to store refrigerated samples for research into conditions such as Spinal Muscular Atrophy and MNGIE.
Julie said, “It made us feel so good knowing that any research breakthroughs could help people following Bob with the same disease and other similar conditions.”
Bob has been a patient at St Vincent’s for over 25 years. His association began with the former Director of Neurology, the acclaimed Professor Sir Edward Byrne, who was one of the pioneers of mitochondrial medicine.
Julie recalls that Professor Byrnes was fascinated about Bob’s condition. “Although there still isn’t a treatment, at least over the years, they’ve learned much more about the condition, in fact they’re still discovering things about it. That’s why Bob is happy to volunteer as a ‘guinea pig’ during the student training days. They like him because his symptoms aren’t straightforward, and they can learn so much from him.”
Julie said she and Bob are so grateful to St Vincent’s for the care they’ve given him. “The Neuroscience Department been really good, referring us to places I didn’t even know I could get help from.”
The team invited Julie and Bob to a morning tea to thank them for their generous gift. Unfortunately, Bob wasn’t well enough to attend, but Julie gained a lot from the visit.
“Seeing the joy on the faces of Rosetta, the Senior Scientist, and Lauren, the Head of St Vincent's Stroke Unit, was really moving. Rosetta even shed a few tears.
“It was so great to meet the women involved in his research and to visit the trial lab. Would you believe Rosetta worked on Bob’s samples 20 years ago and still has some of those samples!
“It felt so good to bring joy to them. Bob, who is the humblest man I’ve met in my life, said he couldn’t understand that we’d done anything special. But the look on their faces said we did,” Julie said.
Melina Talanis, Director (acting) of St Vincent’s Foundation Victoria, said, “On behalf of the Foundation and the Neuroscience team, I wish to extend our heartfelt thanks to Bob and Julie. Your inspired gift to support critical research into rare neuromuscular and mitochondrial conditions has the potential to positively impact future generations. Thank you.”
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