September is here so we are celebrating and giving thanks to everyone who has enabled James Hopkins Trust to support Gloucestershire’s young children who are life limited and life threatened for 30 years! To know this practical and emotional support is there for families who are learning to live with the knowledge their child’s life may be short is truly comforting and we couldn’t have done it without the generosity and kindness of every single one of you! This month we will be introducing you to new people every day who are part of our very special story. Sit back and enjoy ‘Thirty stories in thirty days for thirty years’    #JHT30/30

Pearl Foster writes….

I was one of the first respite care nurses starting soon after JHT was founded. It has been an enormous privilege to watch it develop over thirty years. After losing three little boys to a genetic condition, Vance and Heather have used their personal tragedy to help so many children and families in a very positive way. I was employed by a nursing agency and care could only be given in the family home. This could be a very rewarding experience but also pose a number of problems for the nurse concerned being a lone worker. These problems, e.g. walking into someone’s home on your own not knowing what to expect, made it very important for us to have our own premises and background support. Our first premises included an office, small sitting room, kitchen facilities and a tiny toilet with a shower. This made changing nappies quite difficult. However there was support and the opportunity to meet other nurses and children. A prefab containing sensory facility enabled us to give a child a different experience as well as provide exercise and simple physiotherapy. As life went on it was good to get to know several children and their families and learn more about their problems and help that we could offer them in the future.

It was wonderful to watch the development of plans for Kites Corner and to be involved with some of the facilities we needed.

When I was sixty, I would have had to do a refresher course to enable me to remain on the nursing register, much of which would be irrelevant to the care of our children. The parents are the experts in the care of their child and we learn from them. I qualified as a sick children’s nurse in 1957, way before children were allowed home on oxygen therapy and gastric feeding via an abdominal button. I therefore decided to become a volunteer helping in a variety of ways at Kites Corner. I realised that specialised clothing to meet some of the children’s needs were far from suitable, if available, and very expensive. I began making clothing to suit the children’s requirements. How my role had changed!

The first wheel chair cover I made was for a five year old boy going to mainstream school. It was made with football fleece on the inside and water proof material outside. A waterproof poncho was made to have in a bag on the wheelchair for when required. I overheard the mother say, ‘’Now darling you will be warm enough to go and watch the rugby with Daddy.’’ That was all the reward I needed!  Two years later that child rang me up to say ‘’I’ve got a new wheel chair, its electric! I can beat Mummy and Daddy when we go for a walk, it goes 10 miles an hour. Please could I have a new cover and poncho as I’m bigger!!’’

I hold JHT close to my heart, pray the prayer daily and try to keep in touch. Over 80 years old and disabled myself it’s given me many happy memories and I’m so glad I’ve been involved.