A tough road
The Harms’ journey to diagnosis was not an easy one. Like many people, Maria turned to Google and was even more frightened when she read about Sudden Unexpected Death in Epilepsy (SUDEP). It was two months of extreme difficulty, culminating in an emergency trip to Brisbane after a particularly bad cluster of seizures.
After a period at the Royal Children’s Hospital in Brisbane, the Harms family returned to their home in regional Queensland but found that there was little follow up or support available in their local community. Maria wished there was someone to help them navigate the system and help plan for when they got home. She wished she had known about Epilepsy Queensland back then.
Epilepsy was having such a major impact on Charlie’s life every day. He was affected at school so often that Maria had started homeschooling him. For Charlie, it looked like he would never be able to hold a driver’s license or a full-time job due to his frequent seizures and the side effects of medications.
The Great Elders Cattle Muster
Charlie’s little sister Milli wanted to do something to help, so she organised a Purple Day fundraiser in 2017. This success led to a conversation around the dinner table, about how the family could make a bigger difference for people living with epilepsy in regional Queensland. The idea of “The Great Elders Cattle Muster” was born. The Harms’ and the other wonderful families that assisted with the Muster, raised funds to establish a service on the ground in regional Queensland.
A highlight of the Muster for Charlie was meeting the other young people living with epilepsy who were involved in the event. When he met Tayler Kenny and Georgia Sherry, two other young people living with epilepsy, it was as if they could “truly see each other.” Amongst the dust, the cattle and the spirit of helping others doing it tough, the three teens were no longer alone in their battle with epilepsy.
Charlie underwent successful surgery, 11 years on from when he first started experiencing seizures. Since his surgery, the future is now looking much brighter for Charlie, but it has come with a lot of hard work. Charlie is now able to attend school every day and is doing well and even went on to obtain his learner driver’s license!