The Harvey Hext Trust

This charity was set up in memory of my 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 very happy and healthy life until in 2010 we were dealt a devastating blow, after months of tests we were given the life changing news that our precious cheeky boy, our darling little Harvey had Neuroblastoma (cancer). The only known child in the world to have this type of cancer and Down syndrome, Our lives changed forever (again) and we spent the next 5 years living through the most gruelling treatment for childhood cancer, Harvey always had a smile on his face and never failed to astound us with his courage. Our lives were on hold living day by day from hospital to hospital trying to cope with family life with two disabled children, one with what we knew deep down had a life limiting illness, whilst looking after their amazing older sister. Family was 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 reveal a new and inoperable tumour was overtaking Harvey’s organs, it had grown so 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 little baby boy died soon after, surrounded by his adoring family, in  a room full of love, his little heart stopped beating and we were, and will forever be totally devastated and heartbroken. Our little ray of sunshine was taken so cruelly from us all.​

When Harvey died it became apparent that there was very little bereavement support for siblings. Olivia and Spencer were very Kindly sent cardboard memory boxes, but my fear was that cardboard was not durable and not special enough to contain such precious memories. The cardboard boxes were easily damaged and this was heartbreaking.

A few months after Harvey’s death we ordered a wooden bespoke Memory box, we all had a hand in designing the Memory box and 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 to keep their own precious memories of their sibling. Somewhere that was worthy of the precious items it was to hold.​

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 in Harvey’s charity. It is a legacy borne from pure love and a determination not to ever let anyone forget our amazing beautiful son Harvey Hext.​

What your help is achieving

The Harvey Hext Trust – A Siblings Wish supply high quality, wooden, individual A4 personalised memory boxes to each bereaved sibling in the family. The memory boxes will hold the sibling’s treasured items that can stay with them forever and continue to keep the child’s memory alive for future generations. The memory boxes are designed by the sibling using photos, pictures or drawings that are special to them. The memory boxes are offered at an appropriate time by a lead professional, sometimes when end of life is near or often after the child has passed away. This will depend on each individual family. In some cases they are designed by children who are planning their own funeral – as awful as this sounds it does actually happen, particularly with teenage children who have a long terminal diagnoses. I am sure you will agree it is a beautiful gift to leave their siblings or parents.

The boxes can be important part of therapy to encourage children to show emotions and to talk about their bereavement. The boxes are a very simple but effective way of helping a sibling remember their brother or sister and to preserve their memory. Each box also comes with “Harvey bear”. Harvey is a very special bear that conceals a small Velcro pouch at the back. The pouch can be used to carry a small amount of ashes or another precious item. “Harvey bear” can be a comfort that a brother or sister is always close by.  Each personalised memory box costs approximately £200 depending on design and is delivered to the family home.

Olivia and Spencer helped to create Harvey’s memory box – you can see from the pictures in the gallery how beautiful it is. Our box is personal to everything that Harvey loved. With your help we can provide more families with beautiful memory boxes of their own to treasure.​

Please note: Our Memory boxes and bears are only supplied by us to bereaved Siblings or parents who have lost their only child. ​

Our Memory Boxes are only supplied to families through bereavement services; we do not sell boxes directly.​

We are currently working with a number of bereavement services including,​

  • Clic Sargent
  • A Child of Mine
  • The Henry Allen Trust
  • The Children’s Hospice South West
  • Together for Short Lives
  • Jessie May
  • Hugs from Henry
  • Bristol Childrens Hospital
  • Harry’s Rainbow
  • Children’s Community nursing teams NHS
  • Candlelighters
  • South west and south wales organ donation nurses. ​

If you are a professional or bereavement organisation and would like to find out more please contact us or visit www.harveyhexttrust.com

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Harvey's Scarecrow Trail in aid of The Harvey Hext Trust

Registered Charity: A Sibling’s Wish, Charity No.1168844.
For further details please see www.asiblingswish.com

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