THIRTY-TWO years ago today Nicky Hill died, at just seven years old.
Today, by coincidence, is also a day to raise global awareness of the disease that killed him - encephalitis.
Encephalitis is a disease that leads to swelling of the brain, causing memory loss, and a change in personality or cognitive disability.
Over 6,000 people are diagnosed with the disease in England every year, and while there are treatments, there is no cure.
Nicky’s brother, Tom, is now embarking on a series of gruelling challenges to raise money for charity The Encephalitis Society.
The charity gives support and information to families suffering from the effects of the disease, and collaborate with researchers searching for a cure.
Mr Hill explained why he took on the challenge: “I never got to meet Nicky, he died before I was born.
“It wasn’t until I became a father myself 14 months ago that I realised what my parents must have gone through.
“The Encephalitis Society wasn’t around then - my parents went through it with very little support or awareness.”
The 29-year-old, from Wallingford, will complete six remarkable physical challenges, involving running, cycling, swimming and hiking, between March and July.
He said: “Why would people sponsor me for just one of them, when people are doing amazing things all the time? So I whacked a few more tasks on.
“It will be really tough, which it should be.”
Mr Hill’s mother, Helen, said of Nicky’s death: “It was a very sad and distressing time as there was little help or information available then.
“Fortunately, since that time, great improvements have been made in the diagnosis and treatment of the illness.”
The 61-year-old retired primary school teacher added: “We are very proud that Tom has chosen to take on these challenges to raise money for such a worthwhile charity.”
Mr Hill, a publishing editor, has set himself a fundraising target of £1,000, and said: “I’m hopeful for more, though.”
Matthew Caffell, communications coordinator from The Encephalitis Society, said: “Tom’s efforts are absolutely fantastic - it’s really inspiring and will give hope to a lot of different people. We wouldn’t be here without the amazing efforts of people like Tom, we are run purely on donations.”
Mr Hill’s first challenge is just a week away.
He said: “I’m a little bit nervous, but I’m looking forward to getting them started now. I’m in okay shape – probably could be better though.
“The goal is to just finish them all – and I think I can do that.”
Tom’s challenge involves:
- March 2: Reading Half Marathon – 13.1 mile run
- March 23: Windsor Duathlon – 5km run, 20km cycle and then another 5km run.
- April 26: Tough Mudder – A 10 mile assault course; water, barbed wire, electric fences and mud
- May 24: Eton Triathlon – 400m swim in Dorney Lake, followed by a 21.2km cycle and a 5km run.
- June 15: London to Brighton Bike Ride – 54 miles on the bike
- July 10-11: Three Peaks Challenge – Climbing Ben Nevis, Scafell Pike and Snowdon within 24 hours. 27 miles walking, with a total ascent of 9,800 feet, and 462 miles of driving in between.
- To donate to Tom’s challenge, visit www.justgiving.com/ TomHillsChallenge