Eddie Farwell, co-founder and chief executive of Children's Hospice South West (CHSW), has revealed his plans to retire within a year.
Mr Farwell, along with his late wife Jill, founded the charity in 1991, and he has led as chief executive for 20 years.
He believes it is time to pass on the leadership to a new generation.
Mr Farwell said: "It’s not been an easy decision.
"This charity was born out of wanting to provide something to families in the South West where they could feel the same love, care and support that we had experienced for our family without having to travel outside of the region."
He felt proud the organisation now operates three children's hospices which serve more than 550 families - an achievement he described as "beyond what I could ever have imagined".
Eddie and Jill were prompted to establish CHSW during a stay at Helen House's children’s hospice in Oxford.
Their two eldest children, Katie and Tom, were diagnosed with a rare degenerative genetic disorder.
Helen House offered the family a resting place and from this experience, Eddie and Jill decided to provide a similar place for families closer to their home in the Southwest.
CHSW was set up from their family home in North Devon in 1991, aiming to support children and young people living with life-limiting conditions and their families.
The first hospice, Little Bridge House, opened in Fremington near Barnstaple in 1995, thanks to a £1 million fundraising initiative.
The increasing demand led to the opening of a second hospice, Charlton Farm, near Bristol in 2007.
In 2011, a third hospice, Little Harbour, was established in St Austell to cater to families in Cornwall and Plymouth.
While the organisation grew, Jill was diagnosed with breast cancer and sadly passed away in 2004.
Mr Farwell, who worked for Devon County Council social services at the time, succeeded Jill as chief executive of CHSW in February 2005.
Speaking about his retirement plans, Mr Farwell noted that his 2025 retirement would mark the 30th anniversary of Little Bridge House and his 20th year as CEO.
He said: "CHSW has been Jill’s and my life’s work, and it has been a privilege to be involved in such an endeavour.
"Not many people are given the opportunity to do as we have done."
The Queen became its Royal Patron in 2015 and has since visited all three hospices, highlighting the considerable progress CHSW has made since its inception.
Additionally, for his work in children's palliative care, Mr Farwell was awarded an MBE in 2015 and became an Honorary Graduate from the University of Exeter in 2016.
Tricia Morris, chair of trustees at CHSW, said: "To say that Eddie will be missed is a huge understatement.
"Eddie has been steering the CHSW ship with dedication, careful thought and passion that is so unique to him and his personal experience; that is what has made this charity’s work and its hospices so special."
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