Harvey Hext was a wonderful little boy. He was full of cheekiness and loved to cause mischief with twin brother Spencer. Harvey had Down syndrome.
In 2010 at the age of three, he was diagnosed with stage 4 , high-risk neuroblastoma, an aggressive form of childhood cancer. His parents David and Sarah soon discovered that there were no other cases in the world of a child to have both neuroblastoma and Down syndrome.
In 2010, Harvey’s parents, Sarah and David noticed that Harvey was walking less and less, unusual for the previously active 3-year-old. He also had diarrhea and was complaining of tummy ache. Doctors told the family that they couldn’t find anything wrong with Harvey and if they were still concerned they should seek advice from their local hospital. That’s what they did. A simple blood test was enough for the doctor at that hospital to refer Harvey to the clinical investigations unit in Bristol. On 20th June 2010, Harvey was given an ultrasound scan. Weeks of tests followed including a biopsy of the tumor. The doctors needed to be sure of the diagnosis. Harvey’s biopsy confirmed that the tumor was stage 4, high-risk neuroblastoma, an aggressive form of childhood cancer.
Months of grueling treatment followed for Harvey, including a two-week stint in lead-lined room for two weeks with limited contact, only with his parents and the nurses.
In 2014 Harvey and his family attended an event hosted by a charity called Believe in Magic. There Sarah met a lady named Johannah Deakin, a mother of seven, including two sets of twins. Johannah was touched by Harvey and the Hext family’s story. She went home and told her eldest son all about the family. Her son is Louis Tomlinson, one-fourth of One Direction, arguably the world’s biggest boyband.
Louis was as moved as his mum over the story of Harvey and wanted to help as much as he could. Over the next year Louis and his mum gave them some magical moments that the family can treasure forever, including a trip to Disneyland Paris, VIP treatment at one of the band’s shows, and VIP treatment at a ball hosted for sick children and their families. He also bought them thoughtful and personal gifts.
In October of that year the Hext family were given the devastating news during a routine scan that Harvey had relasped and the tumor had returned along with a new tumor in his chest.
In January 2015 surgeons managed to entirely remove the tumor in Harvey’s chest but it was deemed too dangerous to remove the abdominal tumor.
When Johannah heard that Harvey’s health was declining her and two of her children travelled from their home in Yorkshire to Bristol to spend some time with the family.
The family spent time with Harvey at Charlton Farm Children’s hospice.
Harvey sadly gained his angel wings on the November 29th, 2015. Louis was one of the first to tweet his condolences at the loss of his buddy. Johannah and her family also once again travelled to Bristol to say goodbye to and celebrate the life of the wonderful little boy who they all held a lot of affection for.
Harvey had two siblings, his twin brother Spencer and his older sister Olivia. Grieving for the loss of a sibling, especially when you are a child yourself, can be extremely difficult, so Harvey’s mom Sarah came up with the idea of donating memory boxes to
children who have lost a sibling. These are beautiful personalized boxes where objects, photographs, and notes from the child that has passed can be kept and treasured. Sarah has been setting up a charity named “A siblings wish” (@asiblingswish) to make these boxes available to as many children a possible. The charity should be available for donations soon.
In the meantime, to honor Harvey’s birthday (July 30th), we are fundraising for Solving Kids Cancer, a charity suggested by Sarah Hext. Solving Kids Cancer over the years has raised funds to support families to access clinical trials for children affected by cancer and for research into numerous childhood cancers including neuroblastoma, of which Harvey was affected.
If you would like to donate via our Just Giving page click here.