05:39PM, Monday 02 December 2019
A story of sibling love and loss launched Alexander Devine’s Christmas appeal today (Monday).
The charity, which was co-founded by Fiona and John Devine in 2007, has set itself a fundraising target of £10,000 to continue the support it offers.
This is the first time the charity, which opened up the first children’s hospice in Berkshire at Woodlands Park last year, has launched a Christmas appeal in its 12 year history.
“I think it just shows we have grown as an organisation and a charity,” said Fiona.
“It’s just important to keep the profile going, and for people to really understand what we do.”
Fiona and John set up the charity one year after their eight-year-old son Alexander died from a brain tumour.
The charity’s Christmas appeal features a four-minute video about Zak and Neve Dyson.
For many children, Christmas is an exciting time of year. But for 9 year old Zak and his parents, this Christmas they are facing the unimaginable.— AlexanderDevine (@alexanderdevine) December 2, 2019
Help us be there for more families like Zak'shttps://t.co/mRDyWT8bvS pic.twitter.com/6Qodd4WXzr
It explains how this Christmas has come to be Zak’s first without his beloved little sister and what role the hospice has played in supporting the Dyson family for almost five years.
In the video Zak said: “We really enjoyed waking up every Christmas, jumping on her bed at like six o’clock, it was super funny.”
“I just loved being with her all the time.”
Zak and Neve were three years apart in age and both born with a rare and severe immune deficiency which meant their bodies weren’t able to fight off infections and they constantly struggled with illness.
In a bid ‘to give them the chance of life’ Zak and Neve’s mum, Sharon, and dad, Nigel, made the decision for the pair to undergo bone marrow transplants.
The transplant carried a 25 per cent risk that they could die within the first six months of the procedure.
Sharon said: “We were frightened that we were going to lose not one but two of our children, but we decided they had to do it.”
Big brother Zak underwent the transplant when he was five-years-old.
During his treatment The Alexander Care Team supported the family by providing respite care, sibling support and time play specialist Catherine Northup, who Sharon calls a ‘life saver’.
When Neve’s bone marrow transplant approached it was Catherine who prepared her for what was to come.
Unfortunately after the transplant Neve developed a virus which started attacking all the organs in her body, leaving her in agonising pain.
After Christmas last year, Zak had to face losing his best friend, and Sharon and Nigel their little girl.
Catherine was there once again, and when Zak was ‘getting kind of worried’ it was her who spoke to him.
Sharon said: “I just remember staring at her just thinking ‘my God, what would we do without her?”
Neve passed away on February 22 a couple of days after her sixth birthday.
Zak says this year ‘won’t be the same’ as last Christmas.
He said: “I think we will still enjoy it and we’ll still remember her and be happy that at least we had a sister.”
Sharon said: “It will be a difficult one, we know that, I don’t feel like we’re doing on our own, we have Alexander Devine and they’ve always been there for us.”
The video ends with a word from Zak, he said: “Please help me raise money for Alexander Devine in memory of my little sister Neve so we can help children and families like mine, £10 will just make a big difference.”
Watch the video at www.alexanderdevine.org/christmasappeal and to donate £10 text Neve to 70085. Texts cost £10 plus the standard network rate.
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