News

A ‘kind and gentle’ little boy who died from a brain tumour is continuing to inspire others to fundraise to help other children like him.

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 sixth birthday.

Mum Tuesday first took Riley to the doctors over 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”, she said.

“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 sixth birthday.

"It all came as a huge, huge horrible shock."

After learning about Riley’s diagnosis, the couple were referred to Children’s Hospice South West’s (CHSW) Charlton Farm children’s hospice in Wraxall.

“Initially I didn’t want to go,” said Tuesday.

He was my son, my baby, and I wanted to care for him myself.

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 have 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 support all these years on and when we return to Charlton Farm 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,” said Tuesday.

“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 as a result of 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 Santas on the Run.

“As a family we feel passionately about raising money for the hospice,” said Tuesday.

“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.”

This summer will see their family friend Paul Hardwick  - who was the couple’s best man at their wedding – take part in the charity’s Ride for Precious Lives.

The fundraiser will see cyclists ride 200 miles from Bristol to Cornwall from 12 – 14 July, visiting the charity’s three hospices on route.

Paul, 41, from Evercreech is hoping to raise £2,000 for the charity.

“I visited Riley a couple of times at the hospice,” said Paul.

Seeing the support the charity offered the family I wanted to give something back and do something in Riley’s memory.

“Riley left a lasting impression on all of our lives. He was a very special little boy.

“He will be in my thoughts during every mile I cycle.”

CHSW Area Fundraiser Kylie Gallagher said: "Thank you so much to Tuesday, Paul and their family and friends for their continued support of the vital work we do here to raise awareness and money for local children and their families going through the most difficult of times. 

"Tuesday has helped us in all sorts of ways over the years, fundraising and encouraging others to, volunteering her time, and speaking about her story just to name a few. 

"A massive, good luck to Paul who I will be supporting along the whole of his fundraising challenge too."

Anyone wanting to make a donation can visit Paul’s fundraising page at Paul Hardwick is fundraising for Children's Hospice South West (justgiving.com)