Giving some light to families as they face the darkest of times
PUBLISHED: 16:00 10 November 2018
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East Anglia’s Children’s Hospices is launching Light Up Each Life this festive season to celebrate the life of every child and family the charity currently cares for and has cared for in the past. One family which uses the charity’s services told Cambridge Independent why this campaign is so important.
Seven-year-old Abbie Denston can’t walk or talk and has severe epilepsy but seeing her react to light and even roll over is something her parents never expected.
Abbie was happy baby but at six months old the situation changed.
“She was absolutely fine,” her mother Lisa Ayton, 33 said. “We had taken her home, we had started weaning her and everything was good.
“And then when she was six months old she started having seizures. She started twitching down one side and I don’t know why, but I just panicked immediately.”
Lisa and partner Adam Denston took Abbie to the out-of-hours doctor who told the family it was a febrile convulsion, which is associated with a fever and high body temperature. The doctor prescribed her medication before agreeing to send the family home.
“Then Abbie had a full-on seizure in front of the doctor and went completely lifeless and blue,” recalled Lisa.
Abbie was rushed to hospital and placed in intensive care. She went on to suffer 48 seizures over a 24-hour period.
“Our life changed overnight,” said Lisa. “I don’t know if it would have been easier if we’d known that there was going to be something wrong or if it had happened when she was born, but it was awful. They couldn’t control the seizures and she was put on drugs after drug.”
Doctors prescribed Abbie four different types of epilepsy drug, three of which contained sedation to reduce the seizures.
“She was having a few seizures a day rather than 48. But then she was just sleeping all the time.
“If you picked her up at two years old it was like picking up a massive newborn baby. She was very floppy, she had no head control and she was just sleeping all the time.”
Abbie has a variant in a gene called CACNA1A, which encodes a crucial calcium channel in our bodies that is involved in the function of our brain and nerves.
She was just the second person in the world to be diagnosed with the condition. It means Abbie is tube fed and has respiratory problems which cause a lot of chest infections. She uses a wheelchair and has hypotonia, also known as floppy baby syndrome.
After years of medication and as a last resort, doctors placed Abbie on a ketogenic diet – a high-fat, adequate-protein, low-carbohydrate diet that can be used to treat difficult-to-control epilepsy in children.
“In the first year we noticed improvements in the seizures but not only that, there were improvements in her alertness too. She started moving around and that was amazing for us to see. We’d never seen Abbie even move or do anything since that first seizure,” said Lisa.
Abbie, who attends Granta School, and her family, who live in Cherry Hinton, use the services at East Anglia’s Children’s Hospices’ (Each) Milton facility.
One of Abbie’s favourite things to do at the hospice is to visit the sensory room. Each has a sensory room at all three of its hospices and these rooms contain a variety of technology, using lights, sounds and tactile equipment that can either stimulate or relax the senses depending on the individual.
Lisa continued: “Abbie loves the sensory room. She generally doesn’t react to things at all – but the sensory room brings something out in her. The lights make her really focus and you can tell she’s enjoying herself – it’s amazing and lovely to see. I love being in there with her to see what she enjoys and then I can try to replicate that at home. The use of this room has been brilliant – every time she uses it I see a change in her.
“With the lights, she becomes very focused on it and that’s nice because two years ago she didn’t really react to anything.”
The hospice also supports the rest of the family, with Abbie’s brothers Jake, 12, and Tyler, 4, attending sibling days.
Lisa added: “To be honest it does mean a lot, when we don’t use the services we do notice. Abbie has just had a stay there, and I forget how much it means to the other two to have of our attention to themselves.
“I think that’s the trouble – generally every single day does revolve around Abbie and what Abbie needs. You do forget sometimes that it does affect the others. When she goes to the hospice it means we get to spend time with the boys and do bits with them that they would otherwise miss out on.
“It does mean a lot for all of us individually with the things we access through here.”
Light Up Each Life will run from December 1 to 9 with a range of ways that people can show their support to local families at this special time of year.
Polly West, Each community fundraiser – Cambridge, explained: “Light Up Each Life is a celebration of the children and young with life-threatening conditions that we currently support, those we have supported in the past and their families. Each makes a real difference to the lives of children like Abbie and her family.
“The families we work with tell us what a lifeline Each is to them – that our services give them light at the darkest of times. Celebrating the families we work with at Christmas, which is such a special time of year, will make it all the more poignant.
“There are so many ways you can get involved and by supporting our campaign you will be helping Each to continue to provide our vital care services at a time when families need it most.”
On Saturday, December 8, iconic buildings across Cambridge city centre will be illuminated in Each colours – purple and orange.
Each is encouraging people to take a tour of these historic sites and to give generously to the bucket collections. Businesses, colleges and others can still sign up to get their buildings involved in the fundraising. A full list of all the Cambridge buildings taking part will be available nearer the time.
Also on December 8, there will be a family Christmas concert with Sing! choirs at St Andrew’s Baptist Church. The evening will feature the popular Sing! Choirs performing a medley of uplifting songs. From 6pm. Tickets are available now at each.org.uk/LightUpEACHLife.