From Epilepsy, To Brain Surgery And Beyond!

Hi all. I am Miranda, Jesse’s Mum. I am reaching out for some help. Let me tell you a little about Jesse and his journey so far. Jesse is a happy go larry 12yr old boy from Atherton. He loves spending time with his family and riding bmx bikes. Overall he is a pretty cruisy kid who try’s to not let too much bother him. He started having episodes where he seemed to be “off with the fairies” a little too often. Off we went to the Gp and discussed the likelihood of Jesse having absent seizures. Within days these took a turn. All of a sudden Jesse was having episodes where he was totally non coherent, hands were splayed and almost curling back onto themselves, as well as often being grey in the face, drooling and overall appearing as though he’d had a stroke. With his episodes increasing we took him to not 1 but 2 hospitals where we were able to get his assessment and diagnosis expedited. Jesse was then diagnosed with Epilepsy, having 2 types of seizures… complex focal and absent. A little while later a series of MRI’s were done with all of them showing that Jesse has a tumour in his left temporal lobe of his brain. Even though Jesse is heavily medicated for his Epilepsy, his seizures continue to break through and appear as though they have and will continue to progressively worsen over time. Through many EEG’s and MRI’s we have been able to see that the tumour is slowly growing and is believed to be the cause of Jesse’s seizure activity. Not only that but he is also having some difficulties with learning, speech and memory as well as trying to manage the effects his medication has on him. Given that his medication is not completely holding back the seizures and that the tumour is growing, the next option is brain surgery. Jesse will undergo a Left Temporal Lobe Lesionectomy sometime within the next few months. Sadly they don’t feel that they will be able to remove all of the tumour but they feel it will give him 80-85% chance of recovery from his seizures. We live 1650km away from his treating hospital and will have to spend many weeks there for surgery and recovery. Our journey won’t end there as there is many more trips expected after as well. Whilst some of our expenses and the surgery is covered, I still have to continue supporting my other 2 children at home and ensuring that bills etc are still paid. It would be amazing to have some family support in Brisbane when surgery time comes, but I have to pay for any other persons flights excluding mine and Jesse’s. Unfortunately, a few months ago I couldn’t get enough time off from work to take Jesse to Brisbane for specialist appointments. I had to give up my job in order to be able to be there for my son. With surgery coming up, I’m hoping that just a few of you can help us out a little. It is incredibly hard for me to be asking for help, but I feel we are truly at a point where we may need it. When speaking to Jesse about the upcoming procedure he says “I’m not worried or scared yet, I just want to be normal.” Please if you can… help this boy get to feel normal again.