No family should ever need a children’s hospice. But when the unimaginable happened to one East Devon family this year, Children’s Hospice South West was able to help them make the most of a short and precious life, writes Andy Keeble.
Children’s Hospice South West is there for families who need it 365 days a year – and only thanks to some incredible fundraising efforts, including in East Devon.
On April 14, just 24 days after an ultrasound scan realised her parents’ worst fears, Elizabeth Voysey died in a children’s hospice, surrounded by her mum, dad, two older sisters and older brother. She was just 15 months old.
Nearly a year previously, Elizabeth’s mum Kathryn, from Colyton, noticed her daughter’s stomach was swollen, and called NHS 111 for advice; the five-month-old was taken to Bristol Royal Hospital for Children, where doctors discovered a mass in her stomach, and she had to undergo surgery to remove a lump bigger than her head.
At the time, the family tried to remain positive and hoped that the tumour would be brought under control by an intensive six-month course of chemotherapy. Their friends organised fundraising events to support them and their three other children, Ella, Lucy, and Johnny.
Axminster Young Farmers’ Club held a cream tea at Colcombe Abbey Farm to help the charities helping Elizabeth.
On January 3 this year, Elizabeth’s first birthday coincided with her last week of chemotherapy. Two months later, friends raised £535 to help send her and the family on a memory-making trip to Disneyland; but within days of the Crowdfunder ending, Kathryn and husband James were told the heart-breaking news that the tumour had returned and that the best care options were now palliative.
Kathryn, a primary school teaching assistant, and James, a farmer and firefighter, were referred to Children’s Hospice South West (CHSW) by Elizabeth’s consultant. The whole family was invited to spend precious time together at the charity’s Little Bridge House children’s hospice near Barnstaple in North Devon.
“It all happened over days,” said Kathryn. “We arrived at Little Bridge House on March 23 and spent a week there making wonderful memories.
“We then spent a week at home before returning for another week. We were all fed and the children were entertained. We also had the opportunity to make foot and hand prints and casts.
“We spent time cuddling Elizabeth, and also time at the beach. It gave us time to rest and keep energy levels up, ready for Elizabeth’s final night. The staff were amazing and looked after everything.”
In the days after Elizabeth’s death, the family stayed at the hospice and were given help organising the funeral. And they were able to spend time with Elizabeth in the hospice’s special Starborn room, a private place where children can lie after their death, and families can say their goodbyes, with support from the team who have cared for their child during their stays.
“Our time here, although difficult, will be looked on fondly,” said Kathryn. “Every single person at Little Bridge House was amazing; and we knew that when we left, we still had their support.”
Kathryn and James have been raising awareness of Elizabeth’s condition since her first diagnosis and they held a family fun day at their farm in the summer to raise money for CHSW.
The charity, which also has children’s hospices in Bristol and St Austell, was founded in 1991 by North Devon parents Eddie and Jill Farwell, who regularly travelled to Helen House in Oxford, then the country’s only children’s hospice, with their two eldest children, Katie and Tom.
Today, it now needs around £10 million a year to provide care and respite for more than 500 life-limited children and their families in the South West.
The service it provides is completely free to any family that needs it and the charity relies almost entirely on voluntary contributions.
So it is only thanks to some herculean fundraising efforts, including in East Devon, that the charity is able to do what it does.
Sidmouth couple Geoff and Bev Thomas have raised thousands of pounds for the hospice through their unswerving dedication to the charity for more than two decades.
The couple almost single-handedly run the charity’s Sidmouth friends group, raising more than £10,000 a year with the help of a small group of volunteers.
The friends group sells teas and coffees in aid of the children’s hospice at the Manor Pavilion, and offers ballroom and sequence dancing twice a month at the town’s All Saints Church Hall.
It also holds monthly tea and talk events at the hall on the second Wednesday of every month, from 2-4pm, to raise awareness of the charity and to tackle loneliness locally.
“We have a quiz, entertainment and a free raffle,” said Geoff, who has also been known to dress up as Father Christmas at the December get-togethers.
“A lot of people are on their own and it gets them down – but everybody seems to enjoy the meetings each month,” he said.
The friends group also sells Christmas cards on behalf of the hospice and people in Sidmouth will also be familiar with the knitted crème egg finger puppets volunteers make and sell to raise money for the charity.
“We have four children of our own and we are fortunate that they are all healthy; we just think this is a fantastic charity and enjoy supporting it as much as we can,” said Geoff.
“It does get tiring – especially in the summer – but we enjoy it and get to meet lots of people in the town.”
There is lots you can do to support Children’s Hospice South West this Christmas. From festive craft sales to Christmas quizzes, fundraising events big and small really do make a difference. The charity is selling its own range of Christmas cards, calendars and diaries online and in its 30 charity shops all over the South West, including in Honiton and Budleigh Salterton.
And there are plenty of other fundraising opportunities available; you and your work colleagues could take part in the charity’s Festive Fashion Friday on December 14, or your business could spread a bit of festive cheer by sending a Christmas e-greeting rather than traditional cards.
You can also enter the charity’s Christmas raffle with a top prize of £2,000 or take part in the weekly £1,000 draw. Gift subscriptions are also available.
To find out more about how you could help, visit www.chsw.org.uk/get-involved
For more feature from East Devon Resident, click here.
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