Children's Hospice South West (CHSW) has confirmed that co-founder and retiring CEO Eddie Farwell lost his battle with motor neurone disease on the evening of March 27, 2025.
Eddie, who was an inspirational leader and advocate for children’s hospice care, announced his plans to retire in early 2024 but was given unexpected news later that year when he was diagnosed with motor neurone disease, a neurological disorder that would inevitably shorten his life.
In sharing the news with the team at CHSW at the time, Eddie said: “I can reflect on the work which Jill and I started in 1991 with much pleasure and satisfaction, knowing that much good has been done and that the charity will endure. I am a very fortunate person to be able to reflect on this hugely important part of my life as a job well done.”
Eddie’s daughter Lizzy shared some words: “My Dad was a kind, thoughtful, brave person always and being able to watch what he had achieved both through Children's Hospice South West and sharing wonderful moments as Dad and Daughter I will never forget.
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.
Dad’s diagnosis was a huge shock, but being with him, caring for him and supporting him through his diagnosis was an honour, always maintaining his sense of humour and I wouldn’t have had it any other way.
I was with him right to the very end.
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.”
Children’s Hospice South West chair of trustees, Tricia, commented: “Eddie was a remarkable man. Words do not adequately describe the legacy he leaves. 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.”
Children’s Hospice South West’s incoming CEO, Phil Morris, added: “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. Meeting his daughter Lizzy has further deepened my appreciation for the incredible history of our charity.
"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.”
Eddie and his late wife, Jill, founded CHSW from the laundry room of their house in North Devon in 1991. Their two eldest children, Katie and Tom, had both been diagnosed with a rare degenerative genetic disorder that sadly meant they would not live to reach adulthood. At the time, the family’s only opportunity for respite was when they travelled to Helen House children’s hospice in Oxford, a place that provided comfort and support from people who knew and understood their situation.
It gave Jill and Eddie the opportunity to recharge their batteries and was a haven for their younger daughter, Lizzy.
This is what they wanted other families in the South West to have closer access to.
After a £1 million fundraising appeal, CHSW’s first hospice, Little Bridge House, opened its doors in Barnstaple in 1995.
Huge demand for its services led to an appeal to build Charlton Farm near Bristol, which opened in 2007. Following this, the Precious Lives Appeal was launched to bring a third hospice, Little Harbour, to support families living in Cornwall and Plymouth. Little Harbour opened in St Austell in 2011.
Eddie was awarded an MBE for his services to charity and children’s palliative care in December 2014.
An online tribute page has been set up in memory of Eddie Farwell: eddiefarwell.memorypage.org