In April 2023, Phil and I will be taking on the challenge of running the London Landmarks Half Marathon. Thank you so much in advance for donating whatever you can, it really will make a massive difference. 

This a note from my friend Sarah about the charity:-

I thought as you are all being so fabulous and supporting this little charity, I should tell you a little more about it and why it was started. I will endeavour to give you regular updates around what I have been up to with the charity and why it is so special. So as many of you will know I am Mum to 3 beautiful children. Olivia 20yrs old, Harvey (Forever 9yrs old) and Spencer 16yrs. 

Harvey and Spencer were born Identical twins. They were diagnosed at birth with Down syndrome, now I don't mind telling you that this totally shook our world and for a while we were completely devastated. However, as life went on and the boys grew, we fell deeper and deeper in love with them and although life isn’t always straight forward and without complications, I can honestly say, hand on heart I wouldn't change my little munchkins for the world   They have, and continue to bring so much joy into our lives and some of the most amazing people you will ever meet, they have taught us far more about life and compassion than we could ever have learned without them. It's a bit of a cliche but, I wouldn't change them for the world, but I would change the world for them. 

In June 2009, after Harvey had been poorly with constipation and bloating, night sweats and crying for no apparent reason for around 7 months and 2 visits to A&E department at the children's hospital, the doctors eventually told me they could find nothing wrong, and maybe I should look into a second opinion. To be frank, they thought I was a neurotic mother! The following day I took Harvey to Weston Hospital’s seashore centre, after some simple blood and urine tests we were sent straight to Bristol Children's hospital further investigations unit, Harvey’s infection markers were sky high. We were given an Ultrasound scan and an hour or so later our darling little Harvey was diagnosed with stage 4 High risk Neuroblastoma, Cancer. He was the only child in the world to have Down Syndrome and this type of horrible cancer. Devastatingly, we were given a 20% chance of survival. 

We soon started 9 months of intensive Chemotherapy, 2 major surgery's, one 14 hrs long, intensive MIBG Radiotherapy (In London) and much more in between, treatments for childhood cancer are brutal and the side effects are unbearable. Unbearable becomes your norm and hospital your second home. Harvey amazed the Doctors with his tolerance of treatment and on many occasions we were told that he may not make it through the next stage, but he did, and with a smile on his face. We visited some amazing places when Harvey was well enough, and we made sure he lived life to the full with some fantastic experiences. Harvey loved life and took whatever was thrown at him without ever complaining. He loved his family so, so much. 

After a routine scan in August 2015 whilst Harvey was looking SO well and running around the ward causing havock with the nurses we were told that Harvey's cancer had progressed and we would have anything from a few weeks to a few months left with him. That week 16 of us jumped on a plane and took him to Spain for his last holiday. Harvey died on the 29th November 2015 age 9 years from a secondary cancer. The cancer, a Sarcoma, was most probably caused by the treatment he was given for Neuroblastoma. Our hearts were broken, and our lives changed forever, we miss our beautiful boy every moment of every day. It’s heart-breaking watching Spencer grow up without his partner in crime. 

I quickly found out that there is very little in the way of support in Bristol and across a lot of the country, for bereaved children. We were given a Memory box by the Children’s hospice, and it soon became a place of focus for Spencer, it was evident how important it was to him, but it was cardboard and quickly became damaged. I wanted him to have something durable that would last a lifetime, something that contains such precious items should be worthy of what it holds. 

In March 2016 the Harvey Hext Trust was born and we have supplied over 500 durable, high quality Memory boxes across the UK to bereaved children. Our boxes cost the Charity £200 each with a Memory bear and delivery. This is not all that the charity does, but it is the main focus. I will leave the rest for another day…….

Well done if you made it this far!