Lucy
As a baby Lucy suffered from infantile spasms – a form of epilepsy that was never cured despite repeated treatment attempts. She also developed a severe intellectual disability, the cause of which has continued to elude her doctors.
“Every time Lucy woke she would go through a cluster of spasms, up to 30 in a row,” Lucy’s mum recalls. “In 2008 the spasms began to change and became ‘drop attacks’, meaning she loses consciousness and her body crumbles to the ground, which can be extremely dangerous, especially if she is around hard objects. They can happen at any time without warning, and they sometimes leave her incoherent for hours afterward. We tried various medication, surgery and an epilepsy diet and it’s always is the same story – things improve for a while before the epilepsy returns.” Lucy’s developmental milestones were also delayed, and assessments undertaken every few years have confirmed she continues to slip further behind.
Lucy’s troubles have had a devastating impact on the whole family. “Lucy is mostly a happy child, but she has some behavioural issues,” Lucy’s mum says. “It can be very hard to function as a normal family would. Imagine living with a toddler in the body of an older child, who is starting to go through the emotional and hormonal changes of an older child.”
Through Brainwave the family have developed a network of friends who understand their situation. “With the support of wonderful organisations like Brainwave, we do get to enjoy a few fun family activities together, such as the annual family camp, Luna Park Christmas Party and family fun day at Featherdale Wildlife Park,” Lucy’s mum says. “It’s lovely to spend time with people who have an idea of what we’re going through.”