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Wednesday, April 21, 2021

Brave Brayden conquers battle

Brayden Grugeon is not your average five-year-old, unlike most he has his own special superpowers.  

The kindergartener, who lives in Berry Park, has faced more hurdles than most adults could even imagine – at the age of three his liver was failing.  

His mum Kim says he went from an energetic toddler to a very sick and lethargic little boy whose skin had started to turn yellow.  

“He came out for breakfast and he looked a bit yellow, and I thought that was unusual, so I took him to our GP,” she said.  

“They wanted him to do a urine test but, of course, Brayden couldn’t go. 

“So, we went home and said we would do it on the weekend and drop it in on Monday but by Sunday he was just not right, his tummy was sore and swollen so we gave him a heat pack and put him to bed but I knew something was wrong.”  

By the morning Brayden was rushed to Maitland Hospital and then referred to John Hunter Hospital. 

What came next was a terrifying whirlwind for the small family. 

Kim, her husband Anthony, and their daughter Ella had to watch their “Bray” go through numerous tests and fight for his life. 

After the results came back inconclusive, they were rushed to Westmead Children’s Hospital in Sydney.  

Following a scary few days, he was diagnosed with a rare liver condition, Fulminant Liver Failure – Brayden’s liver was only functioning at 40%. 

The condition affects only a small handful of children each year and for Braydon it was so critical, doctors only had days to find a transplant.  

“I made the decision to get tested to see if I could be his donor,” Kim said.  

“The night we found out he would need one I had googled liver transplants and found that you could be on the list for quite some time, and I couldn’t bear to see Bray suffer any longer. 

“In my heart I knew this is what I had to do, I had to save my little boy.” 

But, before Kim could go through the surgery, they got a lifesaving call.  

“I followed the nurse out to the front desk and was handed the phone,” she said. 

“I heard: ‘Mrs Grugeon, we have liver for your son Brayden’.  

“I just broke down; I couldn’t believe it, to be able to receive a donor liver in this short time frame is, and will always be, a gift.  

“We can never thank the donor family enough for this gift of life.” 

However, unlike most liver transplants, Brayden wasn’t going to have his old liver removed, instead, for a while, he would live with two. 

The three-year-old underwent a procedure known as APOLT (Auxiliary Partial Orthotopic Liver Transplantation).  

Half of Brayden’s damaged liver was removed, and half of the new liver would be attached in its place, meaning his own liver could heal and recover over time.  

Now, a little more than a year on, the second liver has been removed and Brayden’s has returned to its normal function.  

Kim says even though he was a little bit scared to lose part of his superpowers he is loving his life.  

“Now Bray is full-on and living life to the fullest,” she said. 

“He doesn’t talk much about it but he’s quite happy to show his scar – he calls it his shark bite, but he does get a little bit upset seeing some of the photos.  

“He handled it really well in hospital, however I think it’s in the past for him now, he’s moved on. 

“As his teacher described him, he is a livewire.  

“He is determined and full of life and love, he’s just out there, he doesn’t want to miss out on anything.” 

As one of the faces for Bandaged Bear – a fundraising initiative from the Westmead Children’s Hospital – Brayden’s story is highlighting the importance of research and specialist care for seriously ill children. 

Go to bandagedbear.org.au for more information. 

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