Up until the age of seven, George was living a life like any other healthy child. But one day everything changed for him and his family.
One morning in 2010, George’s parents, Nicky and Phil, found their son lying in bed awake, but unable to move or talk. Terrified, they called an ambulance and George was rushed to hospital. After a series of tests and scans, and with George now regaining speech and movement, the doctors told Phil and Nicky it was probably a severe migraine or partial seizure.
Sadly, George’s episode wasn’t a one off – it marked the start of a serious but undiagnosed condition: “Just six weeks later, George was playing in the garden and suddenly couldn’t talk again,” says Nicky. “From then on, he continued to have regular seizures where he’d go blank, and they gradually got worse over the next year. It wasn’t long before George suffered his first tonic clonic seizure where he falls down and his whole body starts jerking. It was frightening. He was in hospital for a week after that and tests showed he’d had 32 seizures over a 24 hour period.”
To make matters worse, George’s seizures had a significant impact on his development. “George seemed to be deteriorating cognitively,” says Phil. “He went from being really bright to struggling to learn and progress at school. We had an MRI and the results showed George has hippocampal sclerosis on the left side – which means the seizures had irreversibly damaged parts of his brain.
“He was put on steroids and epilepsy medication to manage his seizures and prevent any more cognitive damage, but we didn’t get a proper diagnosis because the doctors didn’t know what was causing it. It was really tough – one day our son was absolutely fine and the next he was seriously ill.”
As George’s condition worsened, the family’s community nurse suggested they get support from Shooting Star Chase, but Nicky and Phil had reservations. “We actually ignored the letter until a key worker from Shooting Star Chase called and arranged a visit. We didn’t think we needed help from somewhere like a hospice,” says Nicky. “But we went to Christopher’s in Guildford and both George and his little sister, Mia, loved everything about it – the swimming pool, the garden, the sensory room. They were in their element!”
But for Nicky, it wasn’t until George had his first two-night stay at the hospice that she changed her mind about Shooting Star Chase. “As well as his epilepsy, George has autism and high anxiety so the slightest bit of change is unnerving for him. So, for George’s first short break, Phil slept in the family flats at the hospice while I stayed at home with Mia. But George was so comfortable and at-ease at Christopher’s that he immediately felt at home and Phil felt able to leave after one night. Then I realised we needed the hospice more than we knew.”
George is now 14-years-old and the family have been supported by Shooting Star Chase for five years with services including short breaks, Hospice at Home and a range of therapies. “At the beginning there’s no way I’d leave George but now Christopher’s is the only place I know he’s safe and happy without us,” says Nicky. “The staff are brilliant and always make him feel welcome, and it’s like his second home. He can be confident and independent, and do teenager things like go to the hospice youth group, or go to restaurants and the cinema without mum and dad. He says he doesn’t feel ill when he’s there.
“Shooting Star Chase has been a lifesaver for us all. For us as parents, we’ve been able to go abroad together without worrying about George and his safety, and I’ve also really benefited from counselling, parent’s groups and complementary therapies at Christopher’s. As a family we get to enjoy things like the Summer Fun Day at the hospice, which we base our holiday plans around because it’s such a fantastic day.”
The support from Shooting Star Chase has also made a difference to Mia, George’s sister. “Mia was only five when George had his first seizure and we think his condition and everything that goes along with it has had a real impact on her,” says Phil. “She goes to art therapy and sibling’s days which helps so much with her nervousness and stress. When we get Hospice at Home or George goes on a short break we can also spend quality time with her and do the things she wants to do.”
Nicky and Phil still don’t have a diagnosis or prognosis for George seven years on from his first seizure, which means the family are constantly having to cope with the unknown. “We know that any seizure could take him from us and he is reliant on his medication to manage his condition, not treat it,” says Nicky. “The damage from the seizures means his emotional maturity is still that of an 8-year-old but we’ve been told he may well outgrow some elements of the epilepsy and we’re hopeful. Whatever the future holds, dealing with the impact of George’s condition is made bearable because of Shooting Star Chase and we simply couldn’t function without them. They are the greatest support network anyone in our position could wish for and when I look back at my hesitation to accept help from Christopher’s I can’t believe how wrong I was.”