The family of an Eastbourne boy awaiting lifesaving surgery have organised a Charity Colour Run this weekend to raise money for two organisations that have helped him.
Young Dylan Mason is to undergo a bone marrow transplant later this year and to thank the Anthony Nolan trust and Clic Sargent, his sister Georgia
Kemp and mother Paula Mason are appealing for people to take part in a Colour Run on Eastbourne seafront by the Sovereign Centre on Sunday (July 5) between 9am and 1pm.
Georgia said, “Colour Run Sussex is a four kilometre, un-timed race, which is much more about fun than the run. All runners are doused from head to toe in colour at different station’s during the circuit. This is to thank the two incredible charities that have been helping my brother Dylan who is on his journey to undergo a bone marrow transplant.”
The entry fee to take part in the Colour Run is £20 and to enter people can visit https://www.eventbrite.co.uk/e/colour-run-sussex-tickets-16430343600
Dylan is awaiting a bone marrow transplant for a rare genetic condition called Fanconi Anaemia.
A donor has been found and he will undergo surgery and Paula said she was indebted to the two charities.
“The last twelve months have been a rollercoaster of emotions and numerous doctors and hospital visits,” she said.
“It all started last summer when Dylan had a throat infection that he just couldn’t shake off. It went on for months, and every time we thought it had gone it would reappear soon after. We tried different antibiotics, homeopathic medicines and lots of rest, but nothing worked.
“Eventually, the doctor decided to run a blood test. We had this done at the hospital and within an hour of being back home the doctors’ surgery rang to say there was a problem and he needed them done again immediately as a matter of urgency and to take overnight things with us
“There were lots more tests carried out and a blood transfusion was needed. By now the children’s ward at the DGH was closed and we were to be transferred to a different hospital but there were no beds at our nearest hospitals in Hastings or Brighton. So at 2am we went by ambulance to Worthing to begin many months of blood tests and transfusions.
“On January 27 this year during one of our routine visits to the haematologist at The Royal Marsden, Dylan was diagnosed with a very rare, genetic, life-threatening disease called Fanconi Anaemia. My world fell apart.
“There is no cure for this. He already has bone marrow failure and is surviving from blood transfusions. He desperately needed a bone marrow transplant to give him any future. The prognosis for bone marrow failure without a transplant is a life expectancy of only two years.
“To hear the news your child needs a bone marrow transplant to potentially save their life is more than devastating.”
Paul said she hopes more people will now sign up the Anthony Nolan Trust.
“To find out there may not be a suitable donor match in a world population of more than seven billion people is horrific and terrifying and should be unheard of. Only 60 out of every 100 patients who need a transplant from an unrelated donor are able to find the best possible match.
“Many people require a transplant for reasons such as leukaemia, aplastic anaemia and other blood disorders. Only approximately 30 per cent of these find a matching donor within their family. Which leaves 70 per cent to chance that their tissue match is some amazingly considerate and kind person registered on a bone marrow register, possibly in another country.
“The Anthony Nolan register has been searched worldwide for Dylan and it is looking hopeful that he has one donor match in France. There was no match for him in the UK even though there are 64 million people living here.
“Not even 1 per cent of the world’s population is on the bone marrow register. How would you feel now if yourself or someone you knew needed a bone marrow transplant? Probably scared, angry and frustrated that there are so many people that could help but don’t.
“Many people are unaware of how easy it is to donate bone marrow. In 90 per cent of cases it is similar to giving blood. And registering is as easy as answering a few questions and spitting in a test tube. Surely that’s not too much to ask to potentially be a hero and save someone’s life?”
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