A lovely note from Shooting Star Children's Hospices:
On behalf of everyone thank you so much for organising the sale of Francis Hunter goodie bags, via Focus Netball Club, and donating all funds raised to Celebrating Rory. It was particularly generous of you to match the donations to bring the total to £440. Thank you.
'Celebrating Rory ' was established by a group of close friends and family of Rory Stowe to celebrate his life and to raise funds and awareness for Shooting Star Children's Hospices, based in Hampton and Guildford. It provided such incredible support for Rory that we want to continue to raise funds to give other children and their families the opportunity to benefit from this, so it is wonderful that you are helping us to do so.
Rory was diagnosed shortly after birth with Menkes Syndrome; a very rare genetic condition which causes severe developmental delay and for which there is no cure. Sadly, Rory died in October 2017 just before his fifth birthday. At the hospice he was given the opportunity to enjoy some amazing facilities including the hydrotherapy pool and the wonderful sensory room and much needed respite was provided for his family; he loved his visits to the hospice and the family always felt very welcome and cared for. He also received wonderful end of life care both medically and emotionally; the whole family were looked after in so many ways throughout this time that it made a heart breaking situation more manageable not least from a practical perspective through the range of support provided,
Shooting Star Children's Hospices cares for babies, children and young people with life limiting conditions and also supports their families. As a leading children's hospice, the charity supports families from diagnosis to end of life and throughout bereavement with a range of nursing, practical, emotional and medical care. It costs them £10 million per year to maintain their vital care service ??" that's £27,000 per day. Approximately 10% of the income comes from government funding so they rely on supporters' generosity to raise the difference to keep the service running and this is where you, by supporting us, really help. We would like to say a huge thank you to you all for your support; all the monies raised by ' Celebrating Rory' go directly to Shooting Star Children's hospices so all contributions really does make a difference!!
