Grace Gala supporting vital research for babies like Skylar

Grace Gala supporting vital research for babies like Skylar
Posted on Mon 25 May 2020

The annual Grace Gala raises vital funds for the Research Foundation of the Cerebral Palsy Alliance and the Grace Centre for Newborn Care, at The Children’s Hospital Westmead.  

Due to the coronavirus pandemic, there is now greater awareness of the value of medical research in improving people’s lives, especially for vulnerable members of our community like Skylar.  

Skylar was born with severe cerebral palsy. He was treated in the Grace Centre, dedicated to intensive care for critically ill babies.  

The extent of the damage to his brain, caused during pregnancy, became clear when he underwent an MRI scan at two weeks old.  

Skylar only had a small chance of survival. His parents were told, should he live, he would never talk, never learn how to walk, never be able to control his muscles and be in severe pain.  

‘My first thought was “if Skylar survives, he is going to be suffering all of this, would this be worse than death for him.”’ Agnes, Skylar’s mum.  

Agnes and her husband made the agonising decision to switch off Skylar’s life support. 

‘Both my husband and I prayed a lot during that time. In the end we decided to leave the decision in God’s hands, to leave Skylar in his hands, which meant taking away life support.’  

Skylar died at home surrounded by his family. While his life was short, he got to go on lots of outings with them.

No parent should ever have to make such heartbreaking decisions for their baby.  

Research can change this. It is the only way to find out the causes of CP and how to prevent it. 

‘Because I’ve been through this, I want to make myself available for people who want to talk because I know I won’t judge. I want to tell people that it’s okay to have those feelings.’ – Agnes, Skylar’s mum.  

The incidence of cerebral palsy has reduced across Australia from 1 in 500 children to 1 in 700. But that does not make it easier for their families.  

‘We’ve gone from 20% infant mortality to 3%. But somehow it hurts even more because it’s so close to being every baby surviving. It’s so tantalisingly close.’ – Professor Nadia Badawi.  

Cerebral Palsy Research Foundation and the Grace Centre share an unwavering commitment to treat, prevent, and ultimately cure, cerebral palsy.

Over the last 12 years, Grace Gala has raised over $9.5 million to support critical research. In turn, the Cerebral Palsy Alliance Research Foundation has grown to become the world’s largest private funder of research into cerebral palsy and a driving force behind breakthroughs in treatment for children born with CP.  

While the Cerebral Palsy Alliance Research Foundation has laid the groundwork for great progress that has seen an exponential improvement in our understanding of cerebral palsy and our ability to treat it, there is still more work to be done.  

And in the wake of the coronavirus pandemic, the need to invest and support cutting-edge health and medical research for the benefit of our community has never been more apparent.  

‘Everything that we have done to improve the outcomes has been through the support of the community, donors and families.’ – Professor Nadia Badawi.  

Agnes’ message to the community is simple:  

‘I want to ask people, if they are financially able, to support research because research cannot continue without funding.’ Agnes, Skylar’s mum.  

Due to the coronavirus pandemic, the 2020 Grace Gala will be held virtually on the 13th of June.

If you would like to purchase a ticket, click here:

You can donate to the Cerebral Palsy Research Foundation by clicking below: 

Uni student Marge is working towards her fitness goals with exercise physiologist Russell. Sessions have been conducted  via Telepractice during COVID and Marge is keen to continue this in combination with in-person.

Our new virtual fundraising challenge, Take20, is a way to challenge yourself, get creative and help people living with CP