Swindon fundraiser Nicki Styles carried the Paralympic Torch close to the home of the paralympic movement on 28 August, the day before the Paralympic Games start in London.
Nicki from Rodbourne has been raising money from trekking in far off lands for Great Ormond Street Hospital for Sick Children and more recently Naomi House Children’s Hospice since 2005.
Her son Brandon, 12, suffers from the rare metabolic disorder argininosuccinic aciduria, a rare inherited disorder which affects one in 70,000 people. It is characterized by deficiency or lack of the enzyme argininosuccinate lyase (ASL) which plays a role in the breakdown and removal of nitrogen from the body in the urea cycle. Failure to break down nitrogen results in the abnormal accumulation of nitrogen, in the form of ammonia, in the blood.
Great Ormond Street cared for Brandon when he first was diagnosed with the disorder and he now attends Naomi House for respite care. So far Nicki has raised about £30,000 in total.
Nicki said: "It was an amazing experience to be selected in the first place and then to actually be there in Aylesbury last night to carry it.
"It was an amazing honour to be asked. I didn’t start fundraising for Great Ormond Street and Naomi House in search of recognition. Brandon had been very ill and still needs a lot of help and they’ve given us a lot of support. But it’s nice to be involved in such a historic event.
"My friend Leslie who I trekked with along the Great Wall of China in 2005 nominated me. We’re off to Vietnam in December; I’m walking for Naomi House and Leslie is raising money for Alzeimer’s."
Nicki will be one of five in a team to each carry the Paralympic torch for 130 metres each through Aylesbury, close to the origins of the Paralympic Games at Stoke Mandeville Hospital, the National Centre for Spinal Injuries.
Hold the torch on 10 September
The torch is designed with a mirrored finish so that its colour adapts to its surroundings.
There’s a chance to hold it and have your picture with it at a charity curry night to be held to raise money and awareness of the work of Naomi House Children’s Hospice at the Bombay Lounge, Peatmoor Village Centre on Monday 10 September, from 7pm.
Call the restaurant on 01793 887799 to book a table.
Nicki and Brandon at a previous fundraising charity curry night at Peatmoor’s Bombay Lounge restaurant