April 24 2014 Latest news:
Monday, December 30, 2013
A inspirational 14-year-old who has been battling a rare duo of cancers for four years wants a haven for other oncology patients set up in his memory.
Deryn’s family had one thing this year they thought they would never have – a Christmas together.
The 14-year-old has been battling the rare duo of cancers Langerhans cell sarcoma and leukaemia since he was 10-years-old.
After moving from Watton to Bristol for a life-saving bone marrow transplant almost a year ago, his family have been on a roller-coaster ride.
Deryn has defied all doctors’s predictions and despite being told his last bag of cells were unlikely to graft and he would not make it to December 25, he and Mum Callie, dad Simon, and brother Dylan, 9, celebrated a “normal” Christmas in a hospice in the south west.
They had a special visit from grandparents two weekends before and on the big day were greeted with sacks full of presents.
Deryn Blackwell, 14, was taken from his Watton home to Bristol in February this year for a bone marrow transplant which doctors hoped would save his life.
He is thought to be the only person to have both Langerhans cell sarcoma and leukaemia at the same time and after good news that the marrow had grafted, the family was told it had failed.
Last month Deryn moved into a hospice in Bristol and his mum Callie says they now live each day as if it is the last with their son.
But having defied the doctors and made it to Christmas, the Wayland Academy student has got his family thinking about his legacy.
After spending weeks in different centres across the country set up for seriously unwell cancer patients, Deryn says he knows what works and what doesn’t for youngsters like him – and what is the most fun.
The family has now pledged to create a centre for children aged between 10 and 18 for them and their families to relax as well as do the activities they have always wanted.
“Deryn has been the driving force behind it because he has been to so many different places. He said what he likes and what he doesn’t,” Mrs Blackwell said.
“We’re doing everything Deryn wanted, and how he wants it done.
“We want people to understand it’s not the end. It will be just the beginning of massive things, all because of what Deryn has given us. He has touched people’s lives.
She added: “I will carry on Deryn’s work and do what he would have really wanted. I will be getting really stuck in to raising money for the project, driving it forward.”
The centre will be the work of Deryn’s charity Do Everything and has already won backing from celebrity comedian Russell Howard and actress Linda Robson.
The family say they worry that when Deryn has died, people’s interest will “drop off” – so they believe a centre and continued fundraising work for the charity to help others like Deryn will keep his memory alive.