Roy is an active ten year old boy from Melbourne, with a noisy four year old brother and baby sister. He loves playing cricket and footy and thinks everyone else should too according to mum Tina.
When Roy was four months old he was diagnosed with infantile spasms; a rare debilitating form of epilepsy. Medications could not control his seizures and at the age of two he underwent massive brain surgery. Sadly, after a few years his seizures returned and at seven he needed more surgery.
As a consequence, therapy has been a large part of Roy’s life, helping him with social skills and through physiotherapy and occupational therapy (OT) enabling him to integrate within the school setting and his community. Brainwave supported Roy by funding six months of OT after his operation. According to Tina, “it was a huge burden from our shoulders, as therapy is so vital for Roy’s development but is also costly.” “A challenge for us is that unlike a broken leg or arm, which is an obvious sign that someone may need assistance, having a brain injury is concealed and thus people’s expectations of Roy can be much higher.” “Roy is a very kind-hearted, gentle boy by nature and understands that he can only do his best. He is a trouper and will have a go at new things.”
Roy and his family have benefitted from attending Brainwave family events. According to Tina, “We’ve enjoyed some fantastic family adventures with Brainwave which are great for the health of our family! Luna Park, ice skating and Werribee Zoo. Even a home visit from Santa Laurence!” “When your family is struggling emotionally and there is no-one else in your situation that you can talk to, having an organisation like Brainwave is a great support.”
According to General Manager Caroline Scully, “Brainwave’s programs reflect the need for ongoing support for children and their families both physically, socially and mentally and what is rewarding is knowing our contribution, whilst small, has made a positive difference in the life of the child and their family.”