‘It could be tomorrow’: Nurse’s strength in the face of terminal disease

A former cancer nurse who dedicated her life to helping the Brisbane community is slowly losing control of her body thanks to her own debilitating diagnosis.

Jo Boon and her husband Peter Boon at home in Gumdale. Picture: Liam Kidston.

A former cancer nurse who dedicated her life to helping the Brisbane community is slowly losing control of her body thanks to her own debilitating diagnosis.

Jo Boon, from Gumdale, says she could wake up any day without a voice as motor neurone disease gradually robs her of her independence.

The tenacious nurse, who once worked as a sports therapist at the Brisbane Roar, hopes her final words are to her family.

“I just want to tell them ‘I love you’,” Ms Boon said.

“It could be tomorrow.

“There is no defined timing on anything.”

Jo Boon and her husband Peter Boon who are childhood sweethearts. Picture: Liam Kidston.

The 59-year-old first realised something was wrong when she was working at Greenslopes Hospital in 2019 and a doctor suggested her suddenly slow speech may be more than just fatigue from night shifts.

Within weeks Ms Boon lost 90 per cent of speech.

“The hardest thing has been losing my independence,” she said.

“I can’t go for a coffee on my own or take myself for a drive.

“I went from having a social, interactive life to being housebound to relying on my family to do everything.”

Since her diagnosis of bulbar motor neurone disease in October 2019, Ms Boon has fought everyday to retain some independence, keep smiling for her family and find a way to help others in the same situation.

Her most notable achievement is a $51,000 cheque she presented to Motor Neurone Disease Queensland on Friday after raising funds through a charity gala.

JoJo’s Glitter Gala lit up the Victoria Park Golf Club on November 6 with the Boon family initially intending to raise $10,000.

Ms Boon was overwhelmed by the response to her charity event which was partially motivated by her disappointment that people diagnosed with her disease don’t qualify for the NDIS after the age of 65.

“I saw red and then I felt guilty,” Ms Boon said.

“I want to give back to all of my friends … I don’t think it’s fair that you work all your life and you get a disease that’s got no cure and then no help.”

Ms Boon’s husband and childhood sweetheart Peter said he hoped and prayed a cure was around the corner.

“Even though it might be too late for Jo, it’s for the future,” he said.

Motor Neurone Disease Queensland CEO, Ian Landreth said that the funds would go a long way to providing specialised support services.

“We are very grateful to Jo and the Boon Family,” Mr Landreth said.

“The Gala was amazing and it was so much more than a fundraising event …”

Motor neurone disease affects over 2000 Australians and kills two people every day.

The average life expectancy is just 2.5 years from diagnosis.

Ms Boon said despite the unknown, she would give her all to be around her family as long as possible and work towards finding a cure.

“Motor neurone disease picked the wrong chick,” she said.