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Eddie's story

Eddie Farwell, CEO and co-founder of Children's Hospice South West, reflects on his own experience with hospice care and how the charity organisation first began...

Eddie and Jill Farwell Co-Founders of CHSW
Since 1983, my late wife Jill and I had been the carers for our two life-limited children, Katie and Tom, who were diagnosed as suffering with a rare degenerative disorder, Mucopolysaccharide Disease Sanfillipo Type A, which meant they would die somewhere between the ages of 10-20.

Whilst we did our best to maximise Kate and Tom’s short lives and their enjoyment of places and situations, it was a very isolating experience and indeed took a significant toll on us both physically and mentally. The positivity that we were able to try to introduce to our family life was not easily sustained in the face of tiredness, lack of sleep and exhaustion, and we looked around for sources of support and help.

At that time we were made aware of the only Children’s Hospice in the world, Helen House, some five hours away in Oxford. However, we were somewhat daunted in hearing the word hospice because we knew that Katie and Tom had many years yet to live and we wondered what use this place could be to us - except at the end of life? As it was, Helen House provided a fantastic relief. We had our first visit there in early 1984 and this marvellous establishment stood alongside us throughout our very long journey to our children’s inevitable death.

Jill and I had finally found a place which, for three to four weeks a year, allowed us the only proper time off from our daily caring and domestic duties. These respite stays gave us precious opportunities to recharge our batteries as a couple, and to spend some quality time with our children without being burdened by tiredness.

In 1986 Helen House assumed even greater importance for us because in that year we celebrated the birth of our third child, “Lizzy”, who was healthy and was born without the disease Katie and Tom had.

So the hospice became a place where, during our breaks as a family, we were able to devote special time to Lizzy and she in turn, over the years, was able to benefit from the love and support given to her by the care team. Now an adult, Lizzy, remembers with great fondness those special times spent as a well sibling at Helen House. 

Eddie Farwell's story
At the beginning of the decade, my late wife Jill and I were beginning to have a ‘crazy’ idea that we could play some part in establishing a children’s hospice which would cover the South West region, stretching from Cornwall and the Isles of Scilly up to South Gloucestershire.

I was restless one night and woke Jill up to say, “I think we should build a children’s hospice in the South West, rather than leave it to anybody else.” She said “Don’t be so silly and go back to sleep!"

But from then on, the idea gained momentum; we knew that there were many hundreds of families in the West Country who should also have the opportunity to experience the benefits which we were receiving at Helen House. 

As I sit and reflect on the past, I am aware that Katie and Tom who had so little that this world values, not only inspired their parents, but also many thousands of people to create Children’s Hospice South West, which has helped and will continue to help, many hundreds of families across the South West.

By the end of 1990 we had gathered a small band of friends in North Devon to form a committee and ultimately, we applied for charitable status. Amongst those friends were Trevor and Eldey Lloyd, and Trevor went on to serve as Chair of the Children’s Hospice South West Trustees for more than 25 years until his decision to retire at the end of 2016.

Planning the building of Little Bridge House and meeting so many people who wanted to be part of the success of it was an incredibly exciting time and a most positive experience to be having, during what was essentially a period of very raw bereavement following Katie’s death.

We started off in the laundry room of our home in North Devon. We spent days, evenings and weekends on the road with printed leaflets talking to anyone who would listen about the project.

We were heading towards opening Little Bridge House in September 1995, but then came another bombshell; my wife Jill was diagnosed with breast cancer. Happily, Little Bridge House did open in September 1995 and Jill, restored to reasonable health, was able to resume her post of administrator.

It was a very moving Opening Ceremony at the site. More than 60 families, who had been waiting to use the Hospice, began to utilise its incredible facilities - all of which had been provided thanks to the generosity of the ordinary men and women, boys and girls who had journeyed with us from 1991. 

Little Bridge House very quickly became oversubscribed, which led to the demand of opening the charity’s second hospice Charlton Farm located just outside Bristol. Jill’s cancer returned in 2001. Gratefully, she was able to lead the Turf Cutting Ceremony at Charlton Farm in Spring 2004. Tragically, she died later that year.

I gave up my work in order to fully commit to Children’s Hospice South West and I took over as CEO. We opened Charlton Farm in April 2007. I, together with a few close friends, knew that a third hospice would be needed to ensure our ultimate goal - that no family in the South West should have to travel for more than 1½ hours to reach their nearest children’s hospice. To achieve this dream, a hospice in Cornwall was needed. With the incredible generosity and dedication of our supporters, Little Harbour opened in December 2011.

As I sit and reflect on the past, I am aware that Katie and Tom who had so little that this world values, not only inspired their parents, but also many thousands of people to create Children’s Hospice South West, which has helped and will continue to help, many hundreds of families across the South West. 

To this day, they are helping us all ‘to make the most of short and precious lives’.