Our journey began when our son Aaron began having seizures at the age of 8 due to Rasmussen Encephalitis. Many years of failed treatments, denial, avoidance and drug trials eventually resulted in Aaron having a left hemispherectomy in 2012 at the age of 14. I have been actively involved in the Australian Hemispherectomy Foundation since its infancy and know the value of connecting and having support on the hemispherectomy journey.
The hemispherectomy journey was a scary and black time. I could only manage with the contact and support of other parents in a similar situations. Even now, over 10 years post surgery these parents remain my closest confidants, they get me, they get our life struggles and genuinely celebrate the small but significant positives. I wish to assist to ensure all carers have the opportunity to connect with others who have some insight into their difficult reality.