The legacy of a remarkable couple with \u2018uncommon courage\u2019 will help Professor Thor Besier and other researchers improve the lives of those with movement disorders.<\/p>\n
Carlo Fiorentino and Julie Thornley, who were both born with cerebral palsy, have left their estate worth $1 million to the Auckland Bioengineering Institute (ABI).<\/p>\n
This is the first bequest made to the ABI in its 20 years. It was made after Carlo heard Professor Thor Besier interviewed on RNZ\u2019s Nine to Noon about the ABI team\u2019s research into the musculoskeletal system and disorders that affect it. He asked to meet Thor, which he did in 2020.<\/p>\n
\u201cIt was such a privilege to meet and spend time with Carlo,\u201d says Thor. \u201cHis attitude towards living a full life was inspirational. He particularly enjoyed the enthusiasm of the early career researchers and postgraduate students who are wanting to make a difference for people like himself.\u201d<\/p>\n
Cerebral palsy is caused by damage to parts of the brain before, during and after childbirth, and it affects a person\u2019s ability to control movement, balance and posture. The lesions that cause the disease are static, but the musculoskeletal systems of those with the condition worsen over time and impairs their ability to walk.<\/p>\n
Using imaging techniques and computational modelling, Thor and the team aim to better understand how and why this happens. This will help them identify what interventions could be made to lessen or prevent that progression.<\/p>\n
Jane Carrigan was Carlo and Julie\u2019s friend and disability advocate for more than a decade and, recently, the executor of their will.<\/p>\n
\u201cCarlo and Julie lived uncommon lives, with uncommon courage,\u201d she says. \u201cThey did so with dignity and joy, notwithstanding, in their later years, their almost complete dependence on third parties.\u201d<\/p>\n
Carlo was born in Nelson in 1949, and Julie in Wellington in 1953. As young children they both spent time at Queen Elizabeth Hospital in a specialist cerebral palsy unit at Rotorua, although they didn\u2019t meet till later at the Pukeroa Home for disabled young people in Hawke\u2019s Bay, when Carlo was 18 and Julie was 14.<\/p>\n