The co-founder of Children’s Hospice South West (CHSW) has died, the charity has said.
Eddie Farwell set up the charity with his late wife Jill in 1991 from their home in north Devon after two of their children were diagnosed with a rare degenerative genetic disorder.
The charity said the former CEO, who retired in 2024, died on Thursday after he lost his battle with motor neurone disease.
Mr Farwell’s daughter, Lizzy, said: “Something I have always admired about my dad is his ability to inspire others, make people feel at ease and to warm their hearts in such a positive way, whether he has known them for five minutes or for 10 years.”
Lizzy said her father’s diagnosis in 2024 was a “huge shock” but that he had always maintained a sense of humour.
“I was with him right to the very end,” she said. “He was so incredibly brave and I have lost a huge part of me in dad and miss him so much already.
“I take comfort from the fact that he is now at peace with my beautiful mum, brother and sister,” she added.
The Farwells founded the charity after their two eldest children, Katie and Tom, were diagnosed with a condition that meant they would not live to adulthood.
At the time, the family’s only opportunity for respite was by travelling to Helen House children’s hospice in Oxford.
The centre inspired Jill and Eddie to establish a similar charity for families in the South West.
The charity’s new CEO, Phil Morris, said: “The heartfelt response to this news is a testament to the remarkable gift that Eddie bestowed upon our region.
“It was an honour to meet him to hear his story and advice.
“As the newly appointed CEO, I am dedicated to preserving Eddie’s legacy, advancing his mission, and ensuring that CHSW continues to evolve to make the most of short and precious lives now and beyond the horizon.”
Tricia Morris, chair of trustees for Children’s Hospice South West, said Mr Farwell was a remarkable man.
“Words do not adequately describe the legacy he leaves,” she said.
“In his 20 years as chief executive he has crafted a very special, caring and supportive organisation.
“Children’s Hospice South West is like an extended family, not just for the babies, children and young people with life-limiting conditions and their families but for our staff, volunteers and supporters.”
The charity said Mr Farwell was awarded an MBE for his services to charity and children’s palliative care in December 2014.
It said his legacy was three hospices; Little Bridge House in north Devon, Charlton Farm in north Somerset and Little Harbour near St Austell in Cornwall.