A four-year-old boy having seizures every day which last anything from 20 seconds to five minutes has been diagnosed with a rare brain tumour. Julius Jones, 4, was diagnosed with the tumour this year after suffering his first seizure on April 5 but it has so far been resistant to medication.
Julius will need to have brain surgery to remove the tumour. His mum, Clare, said: "When Julius was first diagnosed, we felt numb, really, really numb. It was a complete shock, I just couldn't believe what I was hearing. It felt like I was having an out-of-body experience when they said the word 'tumour'. I couldn't eat for two weeks after the diagnosis, I just felt very vulnerable - it's life-altering and like a bomb had been dropped on you
"Honestly, I just thought he was going to die because it was a tumour in his brain and it's a lot more complicated. I did so much research and contacted researchers abroad - I just tried to get as much information as I could.
"We didn't know what was happening, it wasn't something we'd ever experienced or witnessed before. We didn't even know Julius was having a seizure. We rushed him to hospital and after a few hours, they said we could go home and doctors gave us an information sheet called a 'first seizure sheet'.
"It was quite traumatic but we just thought, 'oh, hopefully, he's not going to have another one but then the very next day, he had another one and was acting very, very stange. We were very stressed about it all."
Julius was experiencing cluster seizures, which are small seizures that can last for hours. The seizures can last anywhere between 20 seconds to the longest Julius has experienced, five minutes.
"Cluster seizures can be very dangerous, where Julius has even choked while experiencing one. He could have lots of little seizures in the space of three hours and they go on and on and on. It's really strange because one minute he's playing, the next he's wandering around, not knowing what he's doing or doesn't understand things and isn't responsive - that's the strange thing about them," Clare said.
"You can see when he's in seizure and then when he comes out of it- he goes floppy and then almost jolts up out of the seizure. Afterwards, he can't open his eyes and he's exhausted like he ran a marathon. He then just passes out and can sleep up to three hours after a seizure'".
Clare added: "He gets really disoriented and confused after the cluster seizures and I even said to my husband 'I'm worried, what if he's got a brain tumour?' Doctors then did lots of tests on him and initially diagnosed him with epilepsy, but a parent's intuition told me that it wasn't."
After fighting to get more tests done, Julius had MRIs to monitor his brain activity.
Claire said: "Doctors could see that it was a glioma brain tumour, which is probably one of the rarest childhood brain tumours that exist and they're still finding stuff about. This specific tumour causes epileptic seizures that are refractory to epilepsy medication - basically meaning that the benefits of the medication don't last that long and the seizures will keep coming back."
Clare added: "Julius is on a test pathway for children's epilepsy surgery at Great Ormond Street Hospital. It's a very, very niche type of surgery and it's very different from just normal brain surgery. It's all very invasive."
The family now want to raise as much awareness as they can, and has set up an Instagram page to share as much information and tips for parents. The family wants to raise awareness of the rare syndrome, as well as raise money for The Brain Tumour Charity. If you would like to donate to the fundraiser, click here.
