The Harms journey through diagnosis was not an easy one. Like many people, she 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 knew about Epilepsy Queensland back then.
As Patron of Epilepsy Queensland, the most satisfying thing for me is speaking
up for those who have epilepsy and helping others who are dealing with epilepsy or their family members. When I first spoke to Maria and Charlie about the prospect of epilepsy surgery, 11 long years had gone by, since Charlie first started having seizures.
When Charlie told me how he had never met another young person who lived with uncontrolled epilepsy and “I don’t want to live like this any longer” my heart went out to him.
Epilepsy was having such a major impact on his life every day. Charlie was affected at school so often that Maria had started home schooling 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.
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. Unfortunately, we are still short of the funds required and we need your help.
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. Maria was thrilled to let me know that Charlie has been seizure free 20 months and now has his learner driver’s license.
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, 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.
With your support, we can increase training in rural and regional areas, for schools, day care centres and organisations. We can reach out to health professionals, who are the first point of call for those who are newly diagnosed providing them with patient resources and encouraging referrals to our Helpline for any additional support and counselling. We will be there to connect people living with epilepsy.
Your support will give teenagers like Charlie a greater chance of reaching the same goals and independence as their peers, through being able to drive and get a job. Together we can help ensure that they these families are not alone.
Patron, Epilepsy Queensland
P.S. As an extra thank you for your support, any donations of $100 and over go in to the draw for a Queensland State of Origin ball that I have personally signed.'