Meet little Ethan Cavenagh - the five year old who suffers from around 40 seizures a day.
When his mum Sarah Stothard first spotted him shaking while in bed she initially believed that he was having a bad dream. However the 39-year-old raised the alarm after realising the same thing was happening to him during the day.
The mum-of-two rushed Ethan to A&E and he was diagnosed with epilepsy at the Royal Victoria Infirmary (RVI) in Newcastle. However, as medication is not stopping Ethan's seizures, he has now been referred to Great Ormond Street Hospital in London for more tests.
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Sarah, who is also mum to Lucas, 12, said: "It came out of the blue. He had no previous medical problems, everything was absolutely fine. It started during the night. I thought he was having bad dreams as he was shaking. But it also started happening during the day. I realised it was the same thing and something wasn't right.
"It started to become more regular. In May last year at the RVI they did an MRI scan and a EEG scan, it was absolutely terrifying. They couldn't see anything on the MRI but they picked up seizure activity on the EEG. They started him on an anti-epileptic medication.
"As it's developed over the past year, we have been referred to Great Ormond Street hospital. His seizures were getting worse and the neurologist tried several medications. He's got medication resistant epilepsy and the drugs aren't stopping the seizures. He still takes medication, we're still trying different drugs to see if there's a one which will help."
Little Ethan cannot be left alone as he stops breathing during his seizures and they can happen at any time. While he is at Greenside Primary School, he is treated by trained members of staff who Sarah describes as "fantastic".
Sarah said that if Ethan is standing up he will fall to the floor when he has a seizure. She said: "He has seizures around 40 times a day, sometimes more. When he had his last period in hospital he was having 70 or more a day. If he's up and about he will fall to the floor and that's why we need protective headwear. I have to be with him 24/7. He can never be alone as I don't know when he's going to have a seizure. He stops breathing when he has his seizures, it's like he holds his breath. It's very scary to watch.
"He's a happy boy but obviously in the background he knows in his mind, like I do in mine, that he's got to be careful during certain situations. It's not like he can just go out and ride a bike. His seizures are so frequent that he's probably going to fall off and hurt himself. So it's unfair because he won't get to do these things. He really does take it well considering."
Sarah said that Ethan currently wears a protective hat which she purchased for him from Amazon. However she has set up a Go Fund Me page to raise funds to buy one for him from Ribcap. She feels the headwear from Ribcap, which can be purchased in the style of a cap and a beanie hat, will make him stand out less amongst other children.
Sarah, who works part time as a bank associate, said: "I think it will make him feel safe and certainly give me peace of mind that he's going to be ok when he falls. I can see a difference in the way people treat him. People look at him in a certain way because of the hat that he wears at the minute. If he gets one of these hats it may not be as bad when he is older, it will be just like he's wearing a cap."
She said medics are currently unsure as to what kind of epilepsy Ethan suffers from and whether it will continue to suffer from it as he gets older. She said: "If it is genetic he probably won't grow out of it but they don't know."
Sarah wants to thank her neighbours, including Rachel Wharton, 37, for their ongoing support. She added: "My neighbours have been incredibly supportive. In particular Rachel who is a registered nurse. She's been my first point of call when I have had any medical issues with Ethan. I'm incredibly grateful to all those who have donated."
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