September 30 2014 Latest news:
Thursday, December 27, 2012
The parents of a teenager who has a rare form of cancer have said the community support has been “absolutely overwhelming”.
Deryn Blackwell, 13, of Bridle Road, Watton, was diagnosed with acute lymphoblastic leukaemia in July 2010 and treatment was due to finish in October next year.
But in August this year, the family was dealt a blow after he was diagnosed with the rare Langerhans cell sarcoma.
Now the family has set up a foundation to raise money for children who relapse with rare cancers and eventually want to support studies into rare cancers.
Deryn’s father, Simon Blackwell, 33, said: “The level of support has been absolutely overwhelming. It happened without us having to ask for it. People just get on with fundraising.”
So far £4,000 has been raised since August and part of that has paid for a laptop so Deryn can continue with his school work. The laptop was on his Amazon wish list of items that he wanted to make his time in hospital easier.
The teenager, who is a pupil at Wayland Academy, has been on the children’s C2 ward at Addenbrooke’s since November and by January he will have undergone 14 weeks of combined chemotherapy for both conditions.
It is hoped a bone marrow match can be found so he can have a transplant at the Bristol Royal Hospital for Children.
Before that he will have to have 10 days of intensive head to toe radiotherapy so he has no bone marrow in his body.
Mr Blackwell said: “His personality is exactly the same. He is still too clever for his own good and is still very funny.
“If nothing else, it has taught him to appreciate the things in life that other people take for granted.”
Deryn was given the choice of the bone marrow transplant, which has a slim chance of success, according to Mr Blackwell.
But he added Deryn said: “A chance is a chance and if you don’t take it you don’t have a chance.”
Fundraisers for the charity included a 1,100 mile sponsored bike ride at Tesco supermarket in Watton, which raised £1,500; £400 was raised from an bake sale at Watton Junior School; £1,500 was raised at Wayland Academy during a pink and black day - Deryn’s favourite colours; £200 was raised from a raffle held by Watton business Retrorecyclers; a Shipdham woman shaved off her hair and raised £500; and a woman from Oklahoma, America, who used to study at Wayland High School, dyed her hair pink and black and then cut if off and did a garage sale.
Mr Blackwell said: “I would say to any parent who has a child with cancer or another serious illness to ask for help. Talking is one of the best therapies. Don’t be afraid to accept charity where it is appropriate. The most important thing is stay positive because it is all about your state of mind.”
For information about the charity, which sells black and pink bracelets to raise funds for the worthy cause, visit www.doeverything.org.uk
To find out more about the bone marrow register, visit www.anthonynolan.org