Riley, from Shepton Mallet, was just 6 years old when he died from a rare brain tumour in November 2012. Riley, was first diagnosed when he was just 5 years old, with medics telling parents Tuesday and Alex he was unlikely to make his 6th birthday.
Mum, Tuesday, first took Riley to the doctors during Christmas 2011 after noticing he had become wobbly on his feet. "I took him to the doctors expecting them to tell me he had an inner ear infection, but they sent me straight to Yeovil Hospital where scans and tests revealed just a few weeks later that Riley had a rare brain tumour."
They told me that there was nothing they could do for him and he would be unlikely to make his 6th birthday. It all came as a huge horrible shock.
After learning about Riley’s diagnosis, the couple were referred to Children’s Hospice South West’s, Charlton Farm children’s hospice near Bristol. "Initially I didn’t want to go. He was my son, my baby, and I wanted to care for him myself," said Tuesday.
The family, including Riley’s younger sister Tallulah, first visited Charlton Farm in March 2012. "We stayed for a week and it was amazing for us as a family. Over the following months as a family we were supported by Charlton Farm. Just knowing they were there at the end of the phone was such a comfort."
The hospice has also been so valuable for Tallulah which was really important when Riley was getting so much of the attention. The sibling team was amazing and there was always something special for her to do. It took so much pressure off us.
Riley developed a special bond with his younger sister. "Each time we went to hospital, Riley always wanted to make sure we took something back for Tallulah. When I fell pregnant with Eliza, Riley came to one of the scans. He wanted to meet his new little sister and, just for that brief moment in time, I wanted us to be a family of 5."
Riley - a huge fan of Super Mario - died at the hospice in November 2012, with his loving family by his side.
Eliza was born in May 2013 - the little sister that Riley never got to meet.
"The hospice didn’t just care for us as parents when we lost Riley," said Tuesday. "They cared for us as a family unit and has continued to do so over the years. This was so valuable not only for Tallulah but also for Eliza because it has helped her feel included in our journey with Riley, although she never got to meet him."
We are still getting that support all these years on and when we return there it almost feels like we are going back home.
Tuesday described her first born as a loving child.
Riley was the kindest little boy ever, he was soft and gentle and so full of love.
After Riley’s death the family set up Team Riley to fundraise in his memory. Over the years they have raised nearly £30,000 for CHSW from fashion catwalks, puppet shows, cake sales and other events – all supported by their family and friends. The family has also taken part in the charity’s annual Santa's on The Run.
"As a family we feel passionately about raising money for the hospice. Having its support has been the best thing for us. The money we raise will help ensure this incredible service continues to be there for other families at a very difficult time in their lives."