Just like the National theme “A Million Reasons to Care” BrainLink will promote stories that showcase many of those reasons throughout the week.
BrainLink’s message is to take time out from your caring role, keep active and stay socially connected and we can help you do all of that.
The week commences with Seb and his family and friends inspired to get active for brain injury and carers while shining a light on Sebastian's story.
Wishing them all well as they run in the Nike 2023 Marathon Festival to raise awareness and funds for BrainLink to help us continue training our volunteer ‘Carer Friends”. Thanks for your support, BrainLink appreciate it.
Sebastian's Story
'Our son Sebastian was diagnosed with a Brain Tumor in the brain stem area at the young age of 21.
He was experiencing balance issues and blurred vision and we had taken him to an eye specialist who requested an MRI scan and this is when the Tumor was identified.
This turned our world upside down in an instant. We all rallied behind him to support him as best we could. Sebastian handled the whole situation with such maturity and bravery beyond belief. Due to the nature of the Tumor and where it was, the only option was to operate. Sebastian spent two weeks at Monash Hospital for monitoring prior to surgery. He then underwent two major operations around 12 hours each, just a few short months apart. During the first surgery his 3rd and 4th nerves were damaged resulting in damage to one eye causing the eye to remain closed, permanent pupil dilation and also double vision. Sebastian wears sunglasses day and night as everything is bright due to his permanent pupil dilation. With time the eye has opened to a degree.
After the second surgery, Sebastian needed to have food through a Nasogastric tube for a few weeks as he was unable to swallow properly. After each surgery he had Physiotherapy as part of his recovery. Sebastian was no longer able to drive due to having post-surgery seizures. Once it had been 12 months without seizures, he was able to apply for his licence and had to undergo a full driving test due to the nerve damage in one eye. He needs to wear a patch or block out glasses whilst driving. He passed the test which was a very exciting moment for him to be able to gain his freedom back. He lives with symptoms of nausea, migraines which can disrupt his working life, he does the best he can and is lucky to have such supportive Employers who understand. He never complains and has never once said why me? He in fact told me one day, “mum of all us, I’m glad I’m the one that has this and not any of you”
He is such a beautiful soul and will do anything for family and friends and this is why he experienced so much love and support throughout this ordeal.
He has taught us what it truly means to be faced with adversity and to get on with it and face the challenge head on with such a positive attitude.
It has taught us to not take our family for granted and truly treasure all the moments we have. It was always Sebastians wish to go to Italy someday so when he had recovered and the Neurosurgeon said he was fit to travel, we took our whole family to Italy together and they are memories we will treasure forever.'
Support Seb and his family
Follow the link to support Seb and his family if you can.
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During the week BrainLink has arranged a variety of activities and events with guest speakers providing the chance to meet up with other carers and learn along the way.
Remember it's important for carers to look after their own health and wellbeing; for your sake and the person you care for.
When a loved one experiences a brain injury it impacts the entire family and friend's network.