How it all began: 25 years of Children’s Hospice South West
- Credit: Archant
Reporter Sarah Howells met Children’s Hospice South West founder Eddie Farwell MBE to find out how the charity first began, 25 years ago…
This year, Children’s Hospice South West celebrates 25 years of helping young people with life limiting illnesses.
Here, founder Eddie Farwell MBE reflects on how it all began...
It’s been 25 years since a ‘bonkers’ thought to build a children’s hospice woke Eddie Farwell MBE in the middle of the night.
“I had three children, two of whom were terminally ill and becoming very frail,” explained Eddie.
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“I look back now and think, was this really a sensible thing to do when I was still working full time and had no fundraising knowledge?”
Katie and Tom
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A quarter of a century later, Children’s Hospice South West runs three different hospice facilities, and cares for around 450 families a year.
And it was all down to the inspiration of Eddie and his wife Jill’s two eldest children, Katie and Tom, who were born with rare genetic illnesses.
“Katie was born in 1980 and was a very happy and healthy child, but we started to notice she wasn’t developing at the same rate as her peers,” said Eddie.
“She only slept around three hours a night which was fairly extreme.”
It was a long journey to Katie’s diagnosis, but one evening, in 1982, Eddie and Jill were watching Songs of Praise when Welsh MP Dafydd Wigley and his wife appeared on screen, talking about a rare genetic illness called Sanfilippo syndrome.
“Jill and I looked at each other and both went cold; it could have been Katie they were talking about,” said Eddie.
In 1983 the couple had their second child, Tom, who showed similar symptoms, and that summer both Katie and Tom were diagnosed with Sanfilippo.
Eddie and Jill faced the horrible fear of knowing their children might only live to the age of 10 to 20 years old.
In 1984 the family sought some respite when St Helen’s House opened in Oxford – the first children’s hospice in the world.
Eddie and Jill would take Katie, Tom and their third child Lizzy - who was born without Sanfilippo - to the hospice four-to-five weeks of the year, until one night in 1990, that idea woke Eddie in the middle of the night.
He said: “I sat bolt upright and said to Jill, ‘we should build a hospice for children in the South West’. She told me to go back to sleep.”
Idea was born
But the thought would not go away and the couple formed a board of trustees in their living room, launching Children’s Hospice South West in May 1991.
“We never worried if we would be successful; we just thought we would give it our best shot,” said Eddie.
It was a struggle. In 1991 Katie died aged 11 – Tom later died in 1998 – and Jill was undergoing treatment for an aggressive form of breast cancer.
But in 1995 their first hospice, Little Bridge House, opened its doors in Fremington to families across the South West.
‘Going for broke’
Since then the charity has grown and Eddie ‘went for broke’ to open two further hospices in Bristol and St Austell, despite becoming a widower in 2004 when Jill died.
“I have thought of my children every single day,” said Eddie, who has pictures of Katie and Tom looking down over his desk as he works.
“They were my inspiration and the inspiration of so many thousands of people who have given so generously.
“To think the people of North Devon have put their trust in us to use their money to help complete strangers is just humbling and incredible.”
Find out more about the work of the charity at www.chsw.org.uk