On Friday night sunSCHine’s annual fundraising event was held at the Hyatt Regency in Sydney.
So far the event has raised an amazing $750,000 to support the Pain and Palliative Care team at the Sydney Children’s Hospital, Randwick, whose staff look after Australia’s sickest and most vulnerable children.
The staff who, every single day, try to make tiny children’s lives just a little bit more comfortable; a little bit happier.
Speaking at the event were Maria Heaton and Gina Sideris, two mums who have had first hand experience with the Pain and Palliative Care team, and who are grieving the babies they lost.
Heaton has, crushingly, seen two children die in the ward. Her daughter Tiarna died in 2003 when she was just three years old, while her son Tristan passed away in 2014 when he was 17. Both children were diagnosed with Isolated Lissencephaly Sequence, a condition where the surface of the brain is either smooth or has abnormal folds.
"Having a diagnosis of Lissencephaly meant that Tristan and Tiarna were both like quadriplegics, they needed 24/7 care and were medically very fragile so needed constant and close monitoring," Heaton said in her speech.
"My beautiful children had trouble breathing, they needed monitoring when they were asleep, and they had seizures, to name but a few of their challenges."
Throughout the years, the Pain and Palliative Care team provided much needed support to the Heaton family.
"As a mother I wanted Tiarna’s death to be as easy and painless as possible," she continued.
"I wanted her to shut her eyes and drift away. My palliative care nurse explained to me that death and birth could both be looked at along the same lines. She said that when a birth is due a lot of planning goes into it and births are filled with emotion, pain and sound. She said that in the same way planning for a death is important but it can also be filled with emotion, pain and sound."