AFTER the tragic passing of their five-year-old daughter earlier this year, a Woosehill family are fronting a Christmas Appeal for Alexander Devine Children’s Hospice Service.
Zak Dyson (aged 9) lost his little sister Neve in February this year. She passed away after complications following a bone marrow transplant in June 2018.
“Christmas is particularly hard,” said mum, Sharon Dyson. “We used to do so much as a family. If it was up to me, I would cancel Christmas. I don’t want to celebrate, I would rather get away from it all.
“Christmas is a magical time of year, it’s about the children.
“But we won’t have one of our children with us. It’s no longer a happy, family occasion.”
Both Zak and Neve were born with a rare and severe immune deficiency. This meant that their bodies were constantly struggling to fight off illness and infections.
Doctors told the family that without a bone marrow transplant, the siblings would not live to teenage years.
During this time, the family were supported by Alexander Devine. The charity provided them with support including preparation for medical procedures, normalising and coping play, school support, outings, and counselling support.
Zak underwent his procedure in 2015 when he was five. He spent three months in hospital and then a further year in and out of hospital, much of it in isolation.
In June 2018, Neve received her bone marrow transplant. However, complications after the procedure meant the five-year-old developed a virus.
As it became clear that Neve would not survive, Alexander Devine continued to support the family and provided end of life support. Neve passed away after her sixth birthday on February 22 this year.
“Zak misses her terribly, but he’s doing better than us. He’s nine going on 19,” said Mrs Dyson.
“They were always incredibly close. Neve was like Zak’s shadow. She always followed in his footsteps. Whatever he liked, she then liked. She just wanted to be with him.
“Everything they went through brought them together.”
The family have been supported by the charity for four and a half years by Catherine Northup, Alexander Devine play specialist.
“It’s been a privilege to know the Dyson family,” she said. “I met Neve when she was two. She was a bubbly, giggly, feisty little girl, she always lit up a room.
“I’ve never giggled so much than with Zak and Neve.
“Zak is so courageous, and he was always so sweet to her. I remember a time when Zak returned from hospital and I was at home with Neve.
“He came through the front door and they just hugged each other for ages, saying ‘I missed you’ over and over. I was just open-mouthed in wonder at the love between them.”
The family continue to be supported by Alexander Devine as they grieve Neve’s passing.
Thinking about this Christmas, Zak said: “Christmas won’t be the same, we really enjoyed waking up every Christmas and jumping on their bed at 6 o’clock.
“I just loved being with her all the time. We were like best friends from the same family.
“Last Christmas with Neve, all she had was a wheelchair so she couldn’t walk really.”
After Christmas, Neve’s illness became more severe.
“She was in intensive care and at that point I was getting kind of worried,” said Zak. “I couldn’t handle it.
“It won’t be the same as last Christmas. I think we will still enjoy it, and we will still remember her, and be happy that at least we had a sister,” said Zak.
“We’re still in a very dark place,” said Mrs Dyson. “It’s very hard, but it would be a million times worse without Alexander Devine, we owe them so much. Our children loved Catherine like she was part of the family.”
Fiona Devine, CEO and founder of Alexander Devine, said: “The Christmas period can be a very difficult time for so many of our families and our support means different things to them all.
“For some it might be the opportunity to get messy making festive crafts that will always be treasured by their families. For others, it could be helping children to communicate through specialist play and music therapy or perhaps some much-needed respite for parents.
“For families like the Dyson’s, it will be the support they need to face their first Christmas without Zak’s beloved sister Neve.
“Our Christmas appeal is about raising awareness of the vital lifeline we provide as well as raising the funds we need to keep supporting families like Zak’s.
“Our support is free to those that need us, but with only 3% government funding we rely heavily on donations and fundraising to provide our children’s hospice service.”
To support the appeal, text NEVE to 70085 to donate £10 (This will cost £10 plus a standard rate message). Alternatively, you can donate via the Devine Christmas Appeal JustGiving page – www.justgiving.com/campaign/devinechristmasappeal2019