Charles Cutajar was a man of many talents. He was strong, active, and could build or create almost anything you could dream of- whether it was a home, or a special batch of vino he whipped up in his garage. He enjoyed spending time with his family- including his wife Grace, and children John, Luke, Catherine, Louise, Anthony and Anne.
But then a motor neurone disease diagnosis arrived.
Louise Xiberras said her father Charles ‘was a fighter- he never complained’.
“The changes he experienced due to MND were very daunting,” she said.
“He couldn’t speak since March 2023, though he was blessed to still be able to use his hand so he could communicate by writing on his whiteboard. He would write his stories on his whiteboard and we’d put them into his iPad so they could be read out. We didn’t lose his tales or funny stories, and he could continue to express himself, which was important.”
Louise remembers her dad as someone who could turn his hand to just about anything.
“He was a carpenter from the age of 14, he used his body in every way he could, he was so strong before MND,” she said.
“He’d do roofing, build houses, fix anything – he was such a great craftsman. He loved fishing and his veggie patch. He would do things for other people – he did quite a bit of charity work during his life. He also built a house for his grandson just three years ago.”
However, when the effects of MND became noticeable, Louise said Charles ‘had to slowly give things away that he enjoyed doing’, but tending to his veggie patch was one non-negotiable.
“Dad could walk when he was first diagnosed, but as the MND progressed he wasn’t able to get around. He wasn’t one to sit still, so when MND NSW and FlexEquip provided him with a wheelchair, it gave him a new lease on life,” Louise said.
“The wheelchair gave him back his independence, and he was able to get outside into his garden again. If he didn’t get that chair I don’t think he would’ve stayed with us as long as he did – it gave him a reason to live,” she said.
“Without MND NSW, I don’t know how we would’ve gotten by, my Dad got all the the equipment he needed.”
It was finding out about the support that MND NSW offers to people living with MND that prompted Charles’ family to complete their own Walk to Defeat MND event in 2022.
“We just wanted to help – with the Walk we all were able to complete the 5km in our own location, but still it was something we could all do together, so we were able to make a difference even while dad was getting support,” Louise said.
“We got the news he had MND, and we wondered ‘what can we do to help?’ – we wanted to raise awareness about MND, and do what we could to help other people living with MND like our dad, so we decided to do the Walk together.”
“At that initial stage, we just went in blind- everyone’s so different with their MND experience and what can happen to them. What kept us sane along the journey was just being in the moment - my dad was such a strong man, and then you see he’s become sick and weak, you see what MND has taken from him. Looking forward and knowing what will happen doesn’t bring you any joy, and looking back and seeing what he’s lost doesn’t bring you any joy. We tried to stay in the moment, as it was the best we can do. We always had that reminder of, ‘what else can we do?’ to help others experiencing what our family was.”
Sadly, Louise lost her father to MND in early 2024.
“Dad passed away on the 3rd of February. Even though we knew what the outcome of MND would be, it still felt we had no preparation, and I can’t believe he’s not here anymore,” Louise said.
“Dad’s wish was to stay home, and he did. Now we try and remember to just take a moment to breathe, and be there for each other,” she said.
The Cutajar family is close-knit - despite living in various locations, they came together to support their parents, and each other.
“We’ve been there through the whole process together, taking turns to care for Dad,” Louise said.
“We’ve always been quite a close family, but this really bonded us. We were mourning for the past year, and just gave each other some understanding. In the last week of Dad’s life we were all together, and were able to tell him what we needed to. We have done everything together, there is a lot of family support.”
Thankfully, they were also able to take Charles to their favourite beachside holiday spot on the South Coast of NSW one last time, putting in extra effort to get him there in his wheelchair to take in the many happy memories of the place he had spent so much time with his children and grandchildren. The family were also able to make sure Charles got to see his extended family at Christmas and New Years parties, for what they now know was the last time.
Even after saying goodbye to their beloved husband and father, Grace, John, Luke, Catherine, Louise, Anthony and Anne, have not stopped thinking of ways to help others. They have set up a fundraiser for MND NSW in honour of Charles, already raising over $12,000 to help us provide equipment, support and more for others living with MND.
“I wanted to thank all the people who donated,” Louise said.
“My dad was able to get everything he needed from MND NSW - we all got the support we needed, and everyone was there to help – they had so much heart, it was beautiful. The people at MND NSW added a lot of value to dad’s life. We’re all very appreciative.”
“We thought if we can help people, and make sure MND NSW can supply people like our Dad with equipment and any services they need, well, that’s why we are here raising money.”
Louise and her family will treasure the happy memories and knowledge shared with their father.
“We learnt a lot from Dad,” Louise said.
“Dad used to make his own homemade wine – he’d go out to Cowra and pick up fresh grapes, though the last time he made it, we just went to the market for them. He had equipment from his father set up in the garage. He taught us how to do it, so it’s something we can now continue to do,” she said.
If you would like to support the Cutajar family’s fundraiser for MND NSW in honour of Charles, please visit their fundraising page here to make a donation.