Enjoying nothing more than spending hours watching re-runs of his favourite TV show Puffin Rock next to his beloved toy Riffy, these cuddly moments spent on the couch mean everything to Finley and his parents after what has been a rollercoaster start to life.

Finley’s journey at the RCH started before he was two months old. He was transferred from the Monash Children’s Hospital by the PIPER service as he required overnight ventilation and specialised care from the respiratory team.

Finley was born with myelomeningocele—a severe type of spina bifida where the membranes and the spinal nerves protrude at birth. At just a tiny one-day old, Finley needed major spinal surgery to fix the opening in his spine.

He was also born with hydrocephalus (excess cerebrospinal fluid on the brain) and Chiari malformation, two conditions that often go hand in hand with spina bifida.

Thankfully Finley’s spinal surgery was a success, but the impending challenges he faced did not stop there.

“Our new home became the Sugar Glider ward,” said Erin, Finley’s mum. “We transferred all of Finley’s care to the RCH which involved a total of seven different medical teams who nurtured us and treated us like family.”

“At birth, it was noted that Finley had stridor which is noisy breathing that occurs due to obstructed air flow, requiring immediate continuous positive airway pressure, or CPAP,” shared Erin. “Eventually, this led to a diagnosis of bilateral vocal cord paralysis, requiring a tracheostomy at six-weeks-old.”

“In his short life, he has undergone countless MRIs, X-rays, numerous lines and blood tests, scopes, sleep and swallow studies and lengthy visits to the RCH. Not to mention four major surgeries—his spina bifida repair, two VP shunts for the hydrocephalus and a tracheostomy.”

“But despite everything, he just gets on with it. He is so brave and brings so much love and joy into our lives.”

Even when Finley has been at his sickest, his parents can attest to his strength and resilience.

“We knew with Finley’s diagnosis that his journey was going to be complex and life-long, but Jacob and I made a promise to always be his biggest supporters and advocates,” Erin said.

“Spina bifida is a ‘snowflake’ disability and it affects everyone so differently. We want people to know that Finley is just like every other child, just with a few extra bits!”

Today, Finley is a big brother to his sister Lilah and despite still getting used to sharing the limelight with the newest member of the family, they try to keep a regular life with road trips and family holidays when they can.

Finley and his family.

Finley is currently being fed through a nasogastric tube and is waiting for surgery to insert a feeding tube into his stomach. Although he does not speak yet, he has learnt to communicate with his eyes and through gestures, knowing exactly what he does and does not like.

“Whenever times get tough, we always think about the hardship he has been through and then quickly remember that we as a family can get through anything,” Erin shared.

“He makes us proud every single day. His little personality is growing bigger and brighter and we absolutely love seeing him shine.”

With a long road still ahead of them, Erin and Jacob couldn’t be more thankful for the unwavering support of Finley’s treating team and the level of care they have provided to their son.

“We are also so grateful that Finley’s best interests have been put first by his care team’s from the very start. They always make sure we are happy with his care plan—they ask us questions, ensure we understand his diagnosis and allow us to have a say and a sense of control over Finley’s next steps.”

“We are so, so, so fortunate to live in a place where the level of medical expertise and equipment is so high.”

“We are so lucky,” she added. “There will never be enough ways to thank them.”