05:00PM, Wednesday 01 January 2020
Alexander Devine Children’s Hospice Service has almost reached its £10,000 fundraising target following the launch of its Christmas appeal.
In a month the charity has received about £8,500 of donations, which will go towards supporting children with life-limiting and life-threatening conditions and their families.
Fiona and John Devine founded the hospice service a year after their eight-year-old son Alexander died from a brain tumour.
Last year the charity opened the first children’s hospice in Berkshire at Snowball Hill, Woodlands Park, which aims to provide a ‘holistic care package around families’.
Fiona said: “There’s a lot of education that needs to happen around children’s palliative care and actually what those journeys are, what it actually means to families - the children themselves, the siblings.”
Dale Simkiss and his family have been supported by the charity since his two-year-old son, Jude, was diagnosed with a rare genetic disorder affecting his brain in June last year.
Dale and Jude’s mum, Mell Wilkes, who are also parents to daughter Correy-Ellen Simkiss, seven, and four-year-old twins Rocco and Ryleigh, were referred to the hospice almost straight away.
“We’ve never ever come across a children’s hospice before, and I suppose until this happens to you, you don’t take too much notice,” said Dale.
“Then we had an earth-shattering diagnosis that Jude might not live to his first birthday.
“I think we were a little bit sceptical initially. You find out the sad news and hear ‘hospice’ and you think about end of life care.
“I didn’t even want to go to the meeting, but 18 months down the line, that’s part of the service they offer, but it’s much more than preparing for end of life.
“It’s about support for families who are going through a difficult time, I think it’s a fantastic charity and I tell that to everyone I meet.”
Jude is registered blind and has limited hearing. At the charity’s hospice in Snowball Hill he has music therapy and uses the pool and sensory room – ‘which he loves’.
Dale said the hospice also has a ‘great siblings programme’ and for Jude’s big sister and brothers the hospice is ‘Jude’s school’.
When they visit the hospice they meet other children with life-limiting conditions, and their siblings, ‘which sort of normalises it for them’.
Going to the hospice and being around families in similar situations also helps Dale.
“It gives you some comfort to know you’re not alone and there are other people going through the same thing,” he said.
The Alexander Devine care nurses quite often come out to the family’s home in Reading and take Jude out for the day, giving Dale and Mel some respite.
The Christmas appeal, which launched on December 2, will raise money to enable the hospice to help families like Dale’s.
A video produced for the appeal focuses on siblings Zak and Neve Dyson and tells the story of how Christmas came to be eight-year-old Zak’s first without his beloved little sister.
Fiona said: “We are so grateful for the generosity shown by those who have seen our Christmas Appeal. Zak is such a brave and inspirational boy, his story has touched so many people.
“We know Christmas can be an expensive time, but we really would urge people to give what they can to help us support more families like Zak’s.”
See the video at www.alexanderdevine.org/christmasappeal. To donate £10 text Neve to 70085. Texts cost £10 plus the standard network rate.
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