health

When palliative care isn't for the elderly, but our tiniest angels.

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.

sunSCHine Event 2017
Maria and Gina speaking at the event. Image supplied.

"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.

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"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."

For the past decade, Heaton has been working as a Palliative Clinical Nurse Consultant at the hospital, providing much needed support to other families, including Gina Sideris and her husband.

"I love what I do and it is such an honour to support families at their most vulnerable and in their greatest need. I understand the need for support and the need for families to have access to resources in a timely manner. Your support is invaluable to all our families on their children’s palliative care journey at a time when they are most vulnerable," she said.

The Sideris's son, Yianni, passed away on 15 July, 2015 after a short battle with terminal epilepsy.

"The week leading up to his passing, we were offered endless support, I remember a large silver case was rolled into Yianni’s ICU room, the space was transformed into a ‘happy place’, beautiful music, paints, paper cranes, story books… things that brought on a sense of calm into the room, and helped the whole environment relax," Gina said in her speech.

"The strangers who became family to us have never been forgotten. And to this day we know they are still here for us, and we know that our Yianni was not just a number. This without a doubt is what moved me the most."

Since its inception sunSCHine has raised over $2.75 million for the areas of greatest need within Sydney Children’s Hospital, including the Pain and Palliative Care team, the surgery ward and the Child Protection Unit.

You can help support families like Maria's and Gina's by donating here.

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