{"id":10233,"date":"2024-02-23T09:15:58","date_gmt":"2024-02-22T22:15:58","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=10233"},"modified":"2024-02-26T09:04:04","modified_gmt":"2024-02-25T22:04:04","slug":"introducing-the-faces-of-the-2024-good-friday-appeal-meet-finley","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/introducing-the-faces-of-the-2024-good-friday-appeal-meet-finley\/","title":{"rendered":"Introducing the faces of the 2024 Good Friday Appeal \u2013 Meet Finley"},"content":{"rendered":"

When Erin and Jacob describe their two-year-old son Finley, they paint a picture of him lighting up a room with his big blue eyes, his wide smile and most importantly, his loving nature.\u00a0<\/span><\/b>\u00a0<\/span><\/h3>\n

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.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Finley\u2019s journey at the RCH started before he was two months old. He was transferred from the Monash Children\u2019s Hospital by the PIPER service as he required overnight ventilation and specialised care from the respiratory team.<\/span>\u00a0<\/span><\/p>\n

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Finley was born with myelomeningocele\u2014a 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.\u00a0<\/span>\u00a0<\/span><\/p>\n

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.\u00a0<\/span>\u00a0<\/span><\/p>\n

Thankfully Finley\u2019s spinal surgery was a success, but the impending challenges he faced did not stop there.<\/span>\u00a0<\/span><\/p>\n

\u201cOur new home became the Sugar Glider ward,\u201d said Erin, Finley\u2019s mum. \u201cWe transferred all of Finley\u2019s care to the RCH which involved a total of seven different medical teams who nurtured us and treated us like family.\u201d<\/span>\u00a0<\/span><\/p>\n

\u201cAt 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,\u201d shared Erin. \u201cEventually, this led to a diagnosis of bilateral vocal cord paralysis, requiring a tracheostomy at six-weeks-old.\u201d<\/span>\u00a0<\/span><\/p>\n

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\u201cIn 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\u2014his spina bifida repair, two VP shunts for the hydrocephalus and a tracheostomy.\u201d<\/span>\u00a0<\/span><\/p>\n

\u201cBut despite everything, he just gets on with it. He is so brave and brings so much love and joy into our lives.\u201d<\/span>\u00a0<\/span><\/p>\n

Even when Finley has been at his sickest, his parents can attest to his strength and resilience.<\/span>\u00a0<\/span><\/p>\n

\u201cWe knew with Finley\u2019s 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,\u201d Erin said.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cSpina bifida is a \u2018snowflake\u2019 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!\u201d<\/span>\u00a0<\/span><\/p>\n

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.\u00a0<\/span>\u00a0<\/span><\/p>\n

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.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWhenever 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,\u201d Erin shared.<\/span>\u00a0<\/span><\/p>\n

\u201cHe makes us proud every single day. His little personality is growing bigger and brighter and we absolutely love seeing him shine.\u201d<\/span>\u00a0<\/span><\/p>\n

With a long road still ahead of them, Erin and Jacob couldn\u2019t be more thankful for the unwavering support of Finley\u2019s treating team and the level of care they have provided to their son.\u00a0\u00a0\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWe are also so grateful that Finley\u2019s best interests have been put first by his care team\u2019s from the very start. They always make sure we are happy with his care plan\u2014they ask us questions, ensure we understand his diagnosis and allow us to have a say and a sense of control over Finley\u2019s next steps.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWe are so, so, so fortunate to live in a place where the level of medical expertise and equipment is so high.\u201d\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cWe are so lucky,\u201d she added. \u201cThere will never be enough ways to thank them.\u201d<\/span>\u00a0<\/span><\/p>\n