This Christmas, while many gather to celebrate, families affected by MND know that their time together is especially precious. Every moment, and every memory made together, matters.
Kevin Sullivan will always treasure his sister Anne, and there was no question of her staying anywhere other than their place after her diagnosis with MND. For the Sullivan family, MND NSW provided the essential equipment, information and education, and ongoing support they needed. When Anne was diagnosed in early 2025, she couldn’t leave hospital and live at home without significant support - assistance from MND NSW meant she was surrounded with warmth and love while facing MND, cared for by her brother Kevin and his wife Belinda. She was able to stay in their home and spend time with them and their three wonderful children until she sadly passed away later that year. Their hope is for other families now faced with MND to get the support they require.
Donate to the 2026 MND NSW Christmas Appeal
Kevin and Anne's Story
Hundreds of families facing MND need your help to keep them together as they experience the challenges motor neurone disease brings. For the Sullivan family, MND NSW provided the essential equipment, information and education, and ongoing support they needed. When Anne was diagnosed in early 2025, she couldn’t leave hospital and live at home without significant support - assistance from MND NSW meant she was surrounded with warmth and love while facing MND, cared for by her brother Kevin and his wife Belinda. She was able to stay in their home and spend time with them and their three wonderful children until she sadly passed away later that year. Their hope is for other families now faced with MND to get the support they require.
I’ll never forget that terrible day, my wife Belinda and I drove to the Northern Beaches Hospital to be with my sister Anne as she was to receive her diagnosis after a week of tests for her frozen shoulder.
Anne was 59 years old, and she was a very clever person who worked in the digital media and television field. Anne was funny, she had a quick wit, and was a gentle, loving person. Anne was the type of person who helped everyone. She was always on the go and did a million things at once, meeting deadlines for work and she even cared for our ailing Dad. Anne was so supportive of my music career, and I just loved my sister so much.
That day at the Hospital, Anne asked Belinda and I to remain in the room as the Doctor spoke with her for what seemed like an eternity. I thought Anne had stress, or was going to be told to slow down a bit. When the Doctor said ‘I’m sorry Anne, we have done all the tests - you have motor neurone disease and there is no cure’, I was in complete shock.
Anne’s arms had locked up, and she couldn’t walk without assistance. The hospital kept Anne in for another week, performing further tests, and they wouldn’t let her leave until they were satisfied that wherever she would be living had everything in place for her.
Anne was very strong and didn’t complain or get upset. She simply went quiet and took it all on the chin.
This was a completely new world for all of us. Anne decided she would love to come home to our house and live with us, and although we had applied for the NDIS, that was still weeks away. The only other option would have been for Anne to live in a group home, and we simply would not have let that happen.
It was here that we were introduced to the team at MND NSW. They were simply saviours to us and to Anne. Everyone we spoke to from MND NSW literally moved mountains to enable us to get Anne out of the hospital and back home. They provided all this help for free. Yes, for free. We had no idea what we needed, what to do, what forms, what assistance. MND NSW were there for us and provided so much help. Initially it was the vital equipment that Anne needed at our house simply so we could take her home. They ordered it and had it delivered to our house, with people who walked us through how to operate everything.
When we moved Anne into our house, Anne couldn’t feed herself, she couldn’t use the bathroom or shower herself without our assistance and yet MND NSW provided us with so much support, care and love. They were outstanding. They organised for local physios, occupational therapists, counsellors, dietitians, and speech pathologists to assist her, and of course provided the urgent equipment Anne required. And all free of charge.
We will never be able to thank MND NSW enough for what they did.
We heard countless stories from so many health professionals about the challenges of keeping a loved one at home. For my wife and I, it would have been physically and emotionally impossible to look after Anne without the support of MND NSW and their amazing caring team. We had three young children at home, aged 15, 13 and 9 years old. We had the daily challenges of looking after our family, my work as a full time musician and then caring for my sister Anne.
Anne moved in with us in May 2025 and her MND was quite aggressive - her condition changed daily. Sadly, Anne passed away in our home in September 2025, surrounded by her siblings and those that loved her. Anne could speak and communicate with us right to the end, however her legs, arms and neck had all shut down.
MND is the cruellest and most devastating condition and our sister Anne didn’t deserve it, however, the support MND NSW gave to us allowed us to make Anne as comfortable as we could and we will forever be thankful to this amazing team of angels. Thank you MND NSW. I would ask everyone, to please give what you can to the MND NSW Christmas Appeal, so that the critical and much-needed work that they provide can continue.
How you can help
Hundreds of families facing MND need your help to keep them together as they experience the challenges motor neurone disease brings. A donation to the 2026 MND NSW Christmas Appeal helps people living with MND stay connected to their loved ones, maintain their independence and access the support they need to live well for longer. Your generosity helps create more moments together when every moment matters.
