A real life local super hero cycled eight miles to raise money to Sussex Snowdrop Trust
Derren Piner, aged 8 years old, was born with Von Willebrand disease a blood clotting disorder. On Saturday 6 February, he and his family dressed up in Superhero costumes and embarked on a 8 mile cycle journey from his home to the offices of the local children’s charity, The Sussex Snowdrop Trust in Walberton.
Derren had devised the challenge himself as he was determined to do a fundraiser for the charity to thank them for all the support he has received.
Derren describes what it is like living with the condition, “I started to have lots of big horrible nosebleeds, or when I bumped myself I could have a bleed in my joints these were no fun at all and meant I spent a lot of time in hospital or visiting lots of
different hospitals and meant a lot of changes were to happen.
A couple of times last year I had some very very BIG nose bleeds, I had to go on a new treatment plan, and this meant having lots of tests, needles, infusions, blood transfusions, operations, a port-a-cath inserted and long stays in hospital.
Me and my family would visit our local Hospital children ward up to 7 times a week to have my infusions done, we have had to learn how to manage this as there isn’t a way to completely cure the blood disorder.
The Snowdrop nurses help children like me not spend as much time in hospital and enables me to have some of my treatment in the comfort of my own home and spend more time with all my family.
For a little while now, I have been visited and supported by the amazing Snowdrop nurses every 48hrs, and they give me my infusions, without these my bleeding would be a disaster.
They check my observations, help with my medication, access/de-access my port the list goes on, by becoming part of the Snowdrop family I was able to have my infusions done on my sofa in my pyjamas (everyone that knows me knows I love my PJ’s). I also started going to school a lot more, as I was having a lot of time off to go to the hospital everyday, so I didn’t get to see my friends as much."
Derren was given with a round of applause as he arrived in Walberton and there was crowd of Teddy Bears to welcome him. Di Levantine, Chairman and Co Founder of The Sussex Snowdrop Trust presented him with a silver trophy to acknowledge his amazing achievement.
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