ONE of the founders of the Children’s Hospice South West (CHSW), Eddie Farwell, has died after losing his battle with motor neurone disease (MND).

Mr Farwell founded the charity in 1991 with his late wife Jill and served as chief executive until retiring last year.

It was shortly after announcing his retirement that he was diagnosed with MND, which he knew would shorten his life.

He died on Thursday evening (March 27) in what is the 30th anniversary year of opening the charity’s first hospice, Little Bridge House, in Barnstaple, after a £1 million fund-raising appeal.

Mr and Mrs Farwell founded CHSW from the laundry room of their home in North Devon after their two eldest children, Katie and Tom, had both been diagnosed with a rare degenerative genetic disorder which meant they would not live to reach adulthood.

Eddie Farwell with daughter Lizzie, who has paid tribute to her late father.
Eddie Farwell with daughter Lizzy, who has paid tribute to her late father. ( )

At the time, the family’s only opportunity for respite was when they travelled to Helen House children’s hospice, in Oxford, which provided comfort and support from people who knew and understood their situation.

Mr Farwell’s younger daughter Lizzy said: “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 would not 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.

Eddie and Jill Farwell with their children.
Eddie and Jill Farwell with their children. ( )

“I take comfort from the fact that he is now at peace with my beautiful mum, brother, and sister.”

CHSW trustees chairman Tricia Morris said: “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.”

Incoming charity chief executive 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.

“Meeting his daughter Lizzy has further deepened my appreciation for the incredible history of our charity.

The late Eddie Farwell, who with is wife Jill founded the Children's Hospice South West.
The late Eddie Farwell, who with is wife Jill founded the Children's Hospice South West. ( )

“As the newly appointed chief executive, 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.” 

At the time of his MND diagnosis, Mr Farwell told people: “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.” 

The charity opened a second hospice, Charlton Farm, near Bristol, in 2007, and a third, Little Harbour, in St Austell, in 2011.

Mr Farwell 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 Mr Farwell.