Date published: 08 August 2022 by Alex Martin

A bereaved father from Shipley, is running the London marathon on Sunday 2 October to raise funds for Rainbow Trust Children’s Charity, in memory of his daughter Charlotte.

Paul Taylor’s daughter Charlotte was born in August 2020 and began life as a normal baby girl - sleeping occasionally and eating a lot. Paul and his wife Jane Hughes were overcome with love and affection for their new baby girl. Sadly, that was all to change when Paul and Jane took her for a check-up after noticing she was unsettled and agitated.

Paul says; “We were completely shocked following that consultation to find out that Charlotte had a brain tumour. She was rushed for surgery the next day to remove as much of the tumour as the doctors could, but it was already too big and too entwined within her brain to be removed through surgery alone and given her young age any radiation treatment was a huge risk. It was devastating.

“The tumour was later confirmed to be a rare and aggressive form of brain cancer (atypical teratoid / rhabdoid tumour) that would be terminal for our baby and a few months later as she passed away peacefully in our home in January 2021.”

This all happened whilst the family was living in Prague, Czech Republic which made an incredibly difficult situation considerably harder. The addition of travel restrictions due to the COVID-19 pandemic meant family and friends were unable to travel to Prague to provide much needed support to the family.

Jane explains; “I felt I was in very safe hands throughout my pregnancy and had a straightforward delivery. The post-natal care both in the hospital and once we were at home were fantastic too. The day we learned of Charlotte’s tumour our world was rocked and, understandably, we struggled to process what was happening. Despite the continued wonderful care we had from the medical staff at the hospital, the lack of family nearby meant that we were in desperate need of extra support.

“We contacted Rainbow Trust and were blown away by the speedy offer of regular support from our Family Support Worker, Angie Pinnock, who we started speaking to regularly on zoom and on the phone. Due to our location in Czech Republic, we did not expect help to be so readily available, but the support has been unbelievably helpful. Rainbow Trust understands the importance of helping families through the entire process, including the grief when a child dies. And not only supporting us, but also our immediate family and friends too.”

Rainbow Trust supports families who have a child with a life-threatening or terminal illness. When a child has a serious illness, family life is turned upside down and time becomes more precious than ever. Here at Rainbow Trust, we pair each family with an expert Family Support Worker who enables them to make the most of time together, giving them practical and emotional support, whenever they need it, for as long as is needed. The COVID-19 pandemic has piled further unimaginable pressure onto these parents and children, and the charity’s Family Support Workers continue to provide a lifeline to them.

Paul says; “We were just so amazed by the incredible job the charity does that we wanted to give something back, and running the London Marathon was one small way that we felt we could do it. We believe that every family who finds themselves in a similar situation to what we've been through, deserves the same level of care we received from the team at Rainbow Trust. So please dig deep and help to ensure that this happens; thank you.”

Paul will be taking on the 26.2 mile course with four friends; Guy Witzling, Ed Knowles, Daniel Saint James and Tom Scally who all met through his running club in Prague, Old Town Running and provided much needed support to Paul and Jane when Charlotte was in hospital.

Anna Johnson, Events Manager at Rainbow Trust said, “It is wonderful to have a family we support in our team for the 2022 marathon, and we wish Paul the very best of luck for the big day. We will have cheering points across the course to give all our runners the support they deserve for taking on this immense challenge.”

To support Paul and Rainbow Trust so that more families with a seriously ill child can be supported please visit his justgiving page.