Felpham 8-year-old raises over £2,500 for Snowdrop Trust and his ‘angels in disguise’

A Felpham eight-year-old with a blood disorder has raised more than £2,500 for a Walberton charity which provides nursing care at home for children with a life-threatening or terminal illness.
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Derren Piner was born with Von Willebrand disease, a blood clotting disorder which means someone with the condition can bleed more easily than normal.

He said: “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.

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“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.

Derren Piner and his fellow superheroes outside The Sussex Snowdrop Trust in WalbertonDerren Piner and his fellow superheroes outside The Sussex Snowdrop Trust in Walberton
Derren Piner and his fellow superheroes outside The Sussex Snowdrop Trust in Walberton

“Me and my family would visit our local hospital’s children ward up to seven 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 Downview Primary School pupil receives support from The Sussex Snowdrop Trust to help manage the disease and he was determined to do a fundraiser for the charity to thank them for all the support he has received.

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On Saturday Derren and his family dressed up in superhero costumes and embarked on an eight-mile cycle from their home in Glynde Crescent to the offices of The Sussex Snowdrop Trust in Walberton.

Derren Piner in his superhero capeDerren Piner in his superhero cape
Derren Piner in his superhero cape

He said: “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 48 hours and they give me my infusions – without these my bleeding would be a disaster.

“By becoming part of the Snowdrop family I was able to have my infusions done on my sofa in my pyjamas.

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“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.

“The nurses always come over with a big smile on their face and make some of the scary moments feel much better.

“Nothing ever seems too much, even if it’s something as simple as a few nice words or making my mum and dad feel better while they are being trained how to do my infusions themselves.

“In our house we call the Snowdrop nurses ‘our angels’ in disguise.“

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Derren arrived at the Snowdrop Trust on Saturday to a round of applause and a crowd of teddy bars 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.

Di said: “It was incredible to see Derren and his family cycling down the street in Walberton.

“We had received reports that they were very wet from flooded cycle paths and that mum, Toni, had fallen off her bike!

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“They all looked amazing in their superhero costumes and I am sure that they brought a smile to many people along the way.

“Having to care for a child with such a distressing condition takes real strength and all the family are heros in supporting their boy Derren to live such a full life.

“The Snowdrop nurses support them every step of the way and give them confidence and advice to enable them care for their precious child.

“Derren was still full of energy as he arrived.

“Thank you to him for being so brave doing this challenge and all the supporters who have already donated over £2,500.

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“This year has limited our capabilities to fundraise so this has been a real boost.

“Congratulations Derren from us all. We think you are incredible.”

To donate to Derren’s fundraiser visit www.justgiving.com/fundraising/toni-newman

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