Race for Grace

28 October 2022

Expected time to read: 2 minutes

This November, Sydney Children's Hospitals Foundation is calling on our Movement of Many to join us for the 10th anniversary of Race for Grace and help raise vital funds for sick babies like Kai.

Kai was one of more than 600 critically ill babies every year who receive extraordinary care at the Grace Centre for Newborn Intensive Care at The Children’s Hospital at Westmead. At just one day old, he was rushed to the specialist unit, where he was diagnosed with Oesophageal Atresia with Tracheo-Oesophageal Fistula, a rare condition affecting 1 in 4,500 children. 

Oesophageal Atresia (OA) is the result of the oesophagus not forming properly before birth, leaving it as two unconnected parts instead of one continuous tube. This means saliva and food cannot pass from the mouth into the stomach as it becomes stuck in the upper pouch. 

Unfortunately, like most babies born with OA, Kai was also born with an abnormal connection or “fistula” between the oesophagus and the trachea – causing breathing difficulties and dusky episodes soon after birth. 

“As first-time parents who hads never even heard of the Grace Centre or Oesophageal Atresia, we were quite overwhelmed,” explained Angelica, Kai’s mum. 

“Being told that your newborn baby may need to spend the first six months of his life in intensive care isn’t something that any parent wants to hear.” 

Thankfully, with a multidisciplinary team of paediatric experts and dedicated specialists, Kai was able to receive the world-class care he needed and deserved. 

“A rotating group of nurses were designated to Kai which meant they knew the ins and outs of his condition and also got to know us really well.” 

“They were so loving and celebrated every small win with us – whether that was the first time he swallowed, changeds nappies, took a bottle or breastfed.” 

After 56 days in hospital and at eight weeks old, Kai was finally able to go home with his mum and dad.  

Now 18 months old, Kai continues to reach new milestones and has recently learnt how to say a few words, including ‘Mum’ and ‘Dada’. When he’s not emptying any cupboard within reach, the cheeky toddler enjoys singing and dancing with Miss Rachel on YouTube. 

Angelica and Blake say they’re grateful a place like the Grace Centre exists, where sick babies can receive lifesaving and extraordinary care when they need it. 

To help support more families at the Grace Centre for Newborn Intensive Care, register for Race for Grace today and cycle 11-hours this November. The funds you raise will help families like Kai’s continue to receive extraordinary care, now and into the future. 

Register at raceforgrace.com.au

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Donate now

You can help support kids just like Kai when you make a donation. 

We have one foot at the front line and one in the future of kids’ health. Providing care and treatment for sick kids is challenging, complex and expensive and your generous donation could support hospital wards, research labs and patient care programs.

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