My name is Dana, and I am Mum to a precious boy now in heaven, Zac Sallese, affectionately known as “Zachy”. Zac was 12 years old when he passed away in 2018.  Zac was an incredibly special person, and he made life better for others. He was certainly here for a reason, to share his love and light and to touch people’s hearts.

Zac was born with a rare form of Noonan’s Syndrome, though it would be 10 years before he was formally diagnosed. He was the first child identified with the particular gene which caused his syndrome. Since then other children have been diagnosed through the research into Zac’s case. Zac’s medical issues included a heart condition, vision problems, scoliosis and hydrocephalus.  Because he was unstable on his feet, and he fatigued easily, also used a medical stroller for much of the time when he was out and about. Though his needs were complex, we were managing perfectly fine. Zachy had a great life despite all the medical interventions.

Zachy was a bright, hilarious, full of life little guy. He loved cows, and anything farm-related. He loved his family and friends, funny videos and slap-stick humour, music, playing on his green ipad, and waving celery about (but only the middle bits with just the right amount of wobble). He had numerous hospital stays, but at home on the farm was his safe-haven. He was also very happy at school and had wonderful friends there.

At 9 years of age, however, my husband and I were completely blind-sided when Zachy was unexpectedly diagnosed with DOLT tumours, which are very rare brain and spinal tumours of childhood. Zac had lived with these from infancy, but they had not been detected despite the numerous tests, scans and surgeries Zac had received. Zachy was only one of 10 children in the world known to have DOLT tumours when he was diagnosed, and one of only 5 in Australia. He was the only known case of a child with both Noonan Syndrome and DOLT tumours. This disease is very newly-understood and there is little reseach in the area.  Zachy’s experience helped with the understanding of this rare disease which currently has no proven treatments.

During his lifetime, Zachy received over 50 operations or medical procedures under anaesthetic. He received treatment in 5 different hospitals in two different states. We as a family spent much time living in hospital. We remember vividly all the people who helped make our stays in hospital just that little bit easier, with visits, care packages, and parcels sent to us during our stay. Even little things like messages, calls, coffee and meal vouchers helped enormously.

Though we were incredibly grateful for the expert medical care Zachy received, we often had to act as co-ordinators for our son’s care. We had to fight for him because we knew him best and knew what he needed. We experienced frustration when professionals hadn’t communicated with the other hospitals, or at times with other departments within their own hospitals. At one point Zac landed in intensive care due to him receiving surgery at the wrong hospital for his complex needs.

Towards the end of Zac’s journey we also started to receive conflicting advice and treatment plans from different professionals. We had to ultimately make the decisions about Zac’s ongoing treatment and his palliative care, choosing purely what was best for our son. We were grateful for those experts who showed compassion, and who listened to us about what Zac’s needs were.

Our wish, through the “Zachy Hospital Support Service” at The Nathan Centre is for families to;

1. Experience a more co-ordinated approach to their child’s hospital care, with an overall plan for their child between different medical experts and hospitals involved,
2. Have valued input into their child’s care plan,
3. Make the whole experience of hospital stays just a little bit more stress-free for families.

If this could be achieved, we would feel as though Zachy’s experience had helped other families of children with complex conditions during their own hospital journeys.