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Running for Syrie

18.12.15 Categories: Patient stories, Supporter stories

5 Jan 2016 - update: Charles completed his challenge, although his knees ‘locked’ at 10 miles, and he had to complete the last three miles slowly and in pain. With determination and hard work he managed to beat his very impressive £5,000 fundraising target. Thank you, Charles!

‘I'm thrilled to have got round under my own steam and just delighted (and feeling very privileged) to have had the chance to raise funds for such wonderful causes,’ he said.

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Two years ago, Syrie Constable, then aged 12, was at school when a friend commented that her eyes and tongue looked yellow. A trip to her local A&E and a barrage of tests later, Syrie was diagnosed with Autoimmune Hepatitis (AIH), a rare chronic condition where the body's immune system attacks the liver. Whilst rare, anyone can get AIH but it is most frequently diagnosed in young teenage girls.

'In the best possible hands'

To get the expert help Syrie desperately needed, she was transferred to King’s. ‘From that moment on we felt we were in the best possible hands,’ says dad Charles. ‘Her readings were off the scale, and despite being treated with very high doses of steroids and immune-suppressants, she showed little signs of improvement. Sometimes it would take her two hours to just get out of bed.’

Having tried every permutation of drug, after several months, Syrie’s health finally started to improve, although she still suffers exhaustion and chronic pain. She continues to need daily drugs and regular check-ups.

‘It’s so tough going through this as a teenager,’ says Charles. ‘This is a condition people can’t see so they don’t know it’s there but it's very real for Syrie. No one can explain to her why she has it and it's tough for her to face the fact there is no cure. It’s a long path.’

New Year, New Challenge

Despite missing months at school, Syrie is now studying for her GCSEs and Charles is inspired by his daughter’s bravery. To give back to the charities that have supported his daughter, Charles will be getting up at the crack of dawn on New Year’s Day to a half-marathon - running from his home in North London to King’s and back again.

Maximum fundraising

And Charles has a plan to maximise his fundraising target. ‘I’ve emptied my contacts book – having worked in TV for 25 years I know a lot of people – and I have a spreadsheet to show who I’ve emailed, who’s replied and who I need to hit again. I’m using LinkedIn as much as possible. I might even be prepared to do some silly things, like shave my hair off, or grow a moustache or something!’

>>You can sponsor Charles on his fundraising page or find out how you can organise your own fundraising event.