Max was born with Ohtahara Syndrome, a severe form of epilepsy that causes continuous infantile spasms. He was diagnosed at one month of age, when his older brother was three. Max’s parents were told that without surgery Max’s life expectancy would be very short.
Max underwent surgery at 10 weeks of age in an attempt to halt the seizures by effectively disconnecting the left and right sides of his brain. At six months of age surgeons operated again, and Max and his family enjoyed three seizure-free years before his problems recurred. MRIs in recent years have pinpointed further areas of abnormality in Max’s brain, which will require further surgery.
Max’s epilepsy has left him intellectually delayed, unable to speak, and weak on the right side of his body. It has done nothing to dent his enthusiasm for fun, however. Max’s parents say both Max and his brother throw themselves into all kinds of regular activities with the boundless energy you’d expect of young kids. “Max is a curious boy and a beautiful, gentle spirit,” says Stuart. “He loves music, swinging and jumping on the trampoline.”
Max and his brother are regulars at Brainwave events. In 2014 alone Max attended his third Brainwave camp – which he adored – and threw himself into everything else on offer too: the Kids n Sibs holiday program, Healesville Sanctuary family day, and Luna Park Christmas party. “You name it, Max and his brother were into it,” Stuart says.