Sarah is an inspirational lady who set up a charity called The Harvey Hext Trust.
The charity was set up in memory of her beautiful son Harvey Hext.
Harvey was born in 2006, an identical twin to brother Spencer. Soon after their birth, both boys were diagnosed with Down Syndrome (Trisome 21).
These two cheeky little lads and their older sister led a happy and healthy life until, in 2010, they were dealt a devastating blow. After months of tests, they were given the life-changing news that their precious cheeky boy, little Harvey, had Neuroblastoma (cancer).
The only known child in the world to have this type of cancer and Down syndrome. The family spent the next five years living through the most gruelling treatment for childhood cancer. Harvey always had a smile and never failed to astound with his courage.
Their lives were on hold, living day-by-day from hospital to hospital to cope with family life and two disabled children whilst looking after their amazing older sister.
Sarah told us: ‘Family is everything to us, and although we were living every parent’s worst nightmare, we were also living for the moment and enjoying every second we could. We made some very special memories. Treatment aside, Harvey lived a great life. The children were very close and adored each other.
‘We knew at any stage everything could change, and in August 2015, just after Harvey and Spencer’s 9th birthday, it did. A routine scan revealed a new and inoperable tumour was overtaking Harvey’s organs. It had grown rapidly and wrapped itself around his little body. There was no way of stopping it, we contacted hospitals around the world in the hope that someone could help us, but it was not to be. In November 2015, Harvey was admitted to our local Children’s hospice, and our beautiful baby boy died soon after, surrounded by his adoring family, in a room full of love. His little heart stopped beating, and we will forever be devastated and heartbroken.
‘Our little ray of sunshine was gone.’
When Harvey died, it became apparent to Sarah that there was very little bereavement support for siblings. Olivia and Spencer were very kindly sent cardboard memory boxes, but Sarah felt that it was not durable and not special enough to contain such precious memories. The cardboard boxes were easily damaged. This was heartbreaking and counter-productive for the children.
Sarah added: ‘A few months after Harvey’s death we ordered a wooden bespoke memory box. We all had a hand in the design. It had such a profound effect on us that we decided we would like to provide every bereaved sibling with their own bespoke wooden memory box. Somewhere that was worthy of the precious items it was to hold.
‘With that, The Harvey Hext Trust – A Siblings Wish was born. Harvey’s favourite colour was red, so it seemed only right that we should incorporate this colour into Harvey’s charity. It is a legacy born from pure love and a determination to let anyone forget our amazing beautiful son Harvey Hext.’
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