Teenager in 10k challenge
Brave Chilli shows courage over illness
A teenager who lives every day to the full despite suffering from a rare and debilitating condition is taking part in a 10K run for charity.
Chilli Turner (16) was diagnosed with rare condition Lesch Nyhan Syndrome when he was 11 months old.
The condition is caused by a deficiency of the enzyme HGPRT which causes a build up of uric acid, leading to neurological damage and potentially kidney problems.
Boys affected by LNS generally can’t walk or sit unaided and have a severe compulsion to self harm. Chilli has had all his teeth removed due to biting off part of his lips.
But despite this the fifth year pupil has a “zest for life” and is taking on a 10k Parallel run in London this Sunday.
His mum Ilona, who lives in Livingston, explained she will be running and will push her son in his wheelchair.
She said: “Chilli is a very lively boy with a real zest for life. He’s very happy and adore new experiences and his main passion in life is basketball. He also adores American football, baseball and playing on his iPad. At the beginning of the year, I entered a lot of run runs in Edinburgh and Chilli loved to come along and watch me. He was always so happy and proud when I got my medal that the end. We had been discussing him doing a run with me and I was actually researching suitable local runs when Parallel London just popped up on my Facebook newsfeed.
“When I told Chilli about it he literally screamed with excitement and the fact that it is fully accessible for him and others like him was a dream come true for us both. Of course, it also meant a few nights away in London and I booked our hotel and place in the run that very day. Chilli has said that he wants to run in the race so he feels like he is doing something like his mum does. He’s desperate to get his medal and goody bag and show it off to his friends at school. But I think really he just wants to make me proud, which I am every day.”
Ilona said she and Chilli will be running in the marathon to raise money for his chosen charity, the Make- a- Wish Foundation, which makes dreams come true for seriously ill children.
He had his wish granted in 2010 when he was treated to an NBA basketball game at the O2 arena and also got to meet a few players.
Ilona continued: “We had such a fabulous time that Chilli wants to help others have they’re dreams come true too.
“We are excited about spending a few days in London seeing some sights and very exited and nervous about the run. Chilli hasn’t been quite so enthusiastic about training as he is for the run itself but the best thing about this run though is there is no pressure to be as fast as possible. We will be running with others like ourselves, pushing their kids in wheelchairs and buggies. There will also be others pushing their own wheelchairs so there won’t be a time limit, it will just be fun. It will be lovely to run with people of all abilities, the day is going to be magical and my biggest thing to look forward to is seeing Chilli’s smile when we finish and seeing him getting his medal. Chilli also has a bucket list and running a race with me was one of the things on it. So this will really be a big tick on that bucket list. It will be a very special moment in your lives.”
To sponsor Chilli and his mum visit www. justgiving. com/ fundraising/ ilonaturner2017