Declan shines a light on the RCH
July 13 2017, 1:56 pm

DeclanShine is not your average 12 year old. A self-appointed ‘ideas man’ of the Junior School Counsel at Wembley Primary School, red carpet frequenter and Harry Potter aficionado, Declan is not only a master fundraiser, he’s also spent most of the past two years at the RCH.

When a bout of gastro lead to trouble speaking and loss of movement control, Declan was rushed to the RCH. He spent the next five months on the Cockatoo Ward. Declan’s condition deteriorated quickly and six teams from across the hospital worked tirelessly to determine the cause.

Over countless appointments, numerous tests and global touch points, the Shine family were presented with a diagnosis: a combination of Opsoclonus-Myoclonus Ataxia Syndrome as well as anti-NMDA Receptor Encephalitis, which resulted in Declan having both an Acquired Brain Injury as well as an Auto Immune disorder.

“That period of not knowing the cause was just awful,” said mum Jeanette, “luckily the specialists and nursing teams that cared for us were fantastic, and Dr Rick Leventer was just amazing throughout the whole process.”

With a confirmed diagnosis, Declan is back at the RCH every six weeks undergoing chemotherapy/steroid treatment and attending regular specialist appointments which are keeping him stable. However, Declan’s condition hasn’t stopped him from keeping up with the important kid stuff, like beating his sisters at video games and quoting lines from his favourite movies and tv shows. Confident and full of charisma, Declan is currently completing his final year of primary school, where he was elected as a school counsellor and has helped raise funds for the RCH Foundation.

“Every year the Junior School Counsellors are in charge of organising the fundraising events and we knew that at least one of them had to be for the RCH,” says Declan. “We had an Easter Fundraiser and a Free Dress Day and raised $2,264.40 for the RCH Foundation.”

Asked how he would like the money to be used, Declan said: “it could go towards research into rare conditions, especially the documentation of symptoms to assist doctors in the future, or alternatively, a statue of me to be placed beside Creature!”

What’s next for Declan?, Getting ready for high school, contemplating Doctor Who and convincing his mum to let him go ice skating.