Ms BURNET (Clark) – Honourable Speaker, this evening I acknowledge the life of Paul Sean Kelly, who died on Sunday, 23 February at the age of 32. Paul died of complications associated with motor neurone disease, ‘the beast’, which he was diagnosed with 10 years earlier. On Saturday 1 March there was a Thanksgiving Service with family, friends and others to pay respect to his family and the man himself. His parents Lyne and John, siblings Jacqueline and Dean [names ok], and the extended families and loved ones were there to remember his extraordinary life.
He had a solid group of friends who regularly visited to play chess or even to take ice baths right along with him on his journey. Carers too were thanked during Saturday’s service. MND is an unrelenting disease requiring around‑the‑clock care. Paul had chosen people to look after him, whose respect for him was clearly reciprocated by his trust, love and friendship.
I first met Paul soon after his diagnosis, almost nine years ago, when his dad, John, received the Citizen of the Year award from the city of Hobart. Paul’s disease was just taking effect, with some muscle weakness making it difficult to stand, and Paul’s search for answers had begun. Whilst I did not see Paul much for a number of years, I did have more contact with his dad, who by then had been elected to the Hobart Council after a highly successful campaign that Paul curated using his myriad journalistic and campaign skills, despite his advancing illness.
Their search for ways to deal with the march of MND was just as tenacious, taking them on many amazing journeys and adventures together. Paul inspired the formation of the community group Safe Water Hobart and he was the key member, heart, soul, and mind. Paul was aware that the work of Safe Water Hobart was not going to benefit his condition materially. His worldview of service was the motivation.
Over the years Paul’s mobility diminished. MND weakens and then paralyses muscles. For Paul, it took a number of years until eventually he was only able to communicate by his computer using retinal recognition. John had recorded Paul’s voice earlier and using AI, words Paul typed with his eyes could be spoken with the sound of his computer‑generated voice.
Paul used that voice for good. He addressed the city of Hobart’s Water Committee. He provided evidence at the United Nations Special Rapporteur on toxics and human rights, Dr Marcos Orellana, when he was here in Hobart. He even narrated a short film on water pollution in the Derwent called Contaminated, something you can view on YouTube or on the Safe Water Hobart website.
A major risk factor for MND is the neurotoxin, BMAA (β-Methylamino-L-alanine). BMAA is produced by most species of blue‑green algae. Algal blooms are occurring more frequently in Tasmania, caused by increasing water temperature, reduced water flows and excess nutrient runoff.
Despite intensive research, MND still lacks an effective treatment. It has been estimated that MND diagnosis have increased by 250 per cent in the last three decades. Genetic factors have relatively minor role in MND causation, but environmental factors must be involved. This was something that occupied Paul’s sharp mind, and he has researched this intensively. Paul also wrote a book of poetry called Through My Eyes, inspired by the life lessons that someone with MND and facing death is somehow free to consider, or as was the case for him.
Clearly, he was a deep thinker, a very good friend, an advocate, someone who continued to be curious and courageous, someone who sought answers and who, in many ways, expects us to continue seeking these answers. To quote Paul:
The great thing about dying or facing the prospect of death is that it helps open you up to the deeper feelings, the more important feelings of who you are.
This grace inspires me, as it does many, to continue Paul’s work so that it is not in vain. The lesson is deep and it is a gift that Paul imparted on many who knew him.
Vale, Paul Sean Kelly, 5 May 1992 to 23 February 2025.
Members – Hear, hear.
