Viv Lavan tells her family story: 'Our children’s hospice journey began when my husband Tony, son Jamie and I were referred to Helen House in Oxford after Jamie had been diagnosed with Duchenne Muscular Dystrophy. We weren’t sure how we felt about a hospice, especially for children, but our fears of doom and gloom where put to rest by being the exact opposite. In fact it was here in the 1980’s we met the Farwell family, and the rest, as they say is history as Jill and Eddie gave rise to Children’s Hospice South West!
The completion of Little Bridge House came just as Jamie was suffering a major health crisis in 1995. We visited, met Head of Care Mandy Robbins for the first time and were admitted on the very first day it opened. When we first arrived, pulling into the drive of this welcoming, golden stone house, Jamie just yelled ‘YES’ it amazed us all.
There was an encouraging sense of being with people who cared and understood, had time to listen and help.
Also, because the Farwell’s were living and breathing the life of having disabled children along with the rest of us, they had not only incorporated all the practical side of things into the building, but appointed very special staff too.
An important aspect of Little Bridge House, and now Charlton Farm and Little Harbour, is that we families are enabled to address the unthinkable and unbearable. Not an easy job with all the implications, but achieved with love and professionalism.
The children can speak with staff in an atmosphere of trust and confidentiality, I know Jamie shared many thoughts he did not wish to share with us. A lot of the children do not want to upset their parents any further, a wonderful unselfish attitude, and value this opportunity.
I believe being a part of the hospice is a huge privilege, and helped us to give Jamie the best quality of life possible. They even liaised with hospitals/GPs/schools and colleges so that he was able to stay in mainstream education. As Jamie once said, ‘My brain is fine mum; it’s only my body that doesn’t work!’
On 16 October 1999, Jamie sadly passed away, aged 19 years. After close family, Little Bridge House was the first place I telephoned. Our family contacts steered us through everything, and I mean everything from then on and I will be eternally grateful.
After a few weeks, the late, incomparable, Jill phoned me and asked if I would like to volunteer in the Truro office. This was a saving grace for me. Tony and I also organised, among other things, a concert with people who wanted to remember Jamie, which raised thousands for the charity.
It has been a joy seeing each of the hospices open, all different, but the same underneath. They are a home from home (only tidier than ours ever was!) ringing with laughter, tears, music and anything else imaginable. No crisis is too large and it is a comfort blanket like no other knowing that 24 hour care is available every single day of the year.
Thank you, you helped us all to cope in a wonderful way, whilst building friendships that last through life and death. No false compassion or awkwardness here, just hugs and love.