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Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.
Total raised so far£0.00
Target£0.00
Total plus Gift Aid: £0.00
Raised offline: £0.00
My story
[p]I will be taking part in the Great Scottish Aquathlon, Loch Lomond, Scotland on 25th August 2018. This will be a massive challenge (800 metre swim followed by a 5k run) I have never done anything like this before so it would be great to have your support![/p][p]I have Osteogenesis Imperfecta Type 1 (a rare bone condition) which means I have had around 50 fractures, although this is just a guess as I have a high pain threshold (When I was 4, I fractured my arm, but nobody knew as I didn’t complain of any pain, it was only discovered on x-ray a few weeks later when I fractured the same arm in a different place)[/p][p]This is a genetic condition, has no cure and affects collagen in the body, which then affects the quality of bone, tendons and ligaments. October 2018 will hopefully mean that I have made it 4 years without any fractures at all (amazing for how clumsy I am!)[/p][p]My condition is estimated to affect 1 in 15,000 people in the UK, which in terms of the general population makes it very rare (I’ve met Doctors who haven’t heard of it)[/p][p]In Primary School, I was initially discouraged from taking part in Sport, as I don’t think anybody thought that I would be any good at it (and they were scared of any fractures) I managed to prove them wrong and by Year 6 I was Captain of the School Netball Team.[/p][p]Since taking up Running in around 2011, I’ve completed 11 half marathons and 3 full marathons (including London) [/p][p]I’m not really sure what will happen with my condition as I get older so I aim to make the most of everyday and live life to the full (inspired by my amazing best friend Nicholas, who sadly died from Leukemia aged 12) I know that he will inspire me on the day of my swim/run, that’s for sure.[/p][p]Joining in with literally anything has its downsides. Some of my more spectacular accidents include:[/p][p]Running around the living room (maybe about Aged 3/4) playing Ambulances (of all games!) slipped and fractured my leg.[/p][p]Running around a shoe shop in Lincolnshire, again aged about 3/4 (seems to be a lot for running involved!) Fell over and fractured my leg[/p][p]Falling off a zip wire (surprisingly no fracture!)[/p][p]Aged 9, messing around in the living room at Christmas, I was swinging between two armchairs and suddenly heard an almighty crack in my elbow. I think I just thought “it felt funny” I had a metal plate and pins put in, and spent Christmas Eve and part of Christmas Day in Newcastle General Hospital.[/p][p]Wearing roller skates and managing to fall down a step (I must have only been about 6!) Probably a fractured wrist/elbow.[/p][p]Getting over enthusiastic, playing Water Polo, diving for the ball and hitting my hand on the side of the pool instead. Its fair to say my finger was at a funny angle. I managed to calmly get out of the pool. I had it surgically pinned.[/p][p]Aged 14, playing Football and someone slide tackled me. I dislocated my ankle and crushed my fibula/fibula. I had to accept that Football wasn’t quite the right sport.[/p][p]First year of University. Walking across a Pub car park (I wasn’t even drunk!) slipped on the ice, fractured my wrist (surgery/external fixation) [/p][p]As many of you who know me, I’m always up for a challenge and I never like to be held back. After running the London Marathon, I decided that I needed a brand new challenge.[/p][p]I am raising money for an outstanding small charity called Findacure. I was asked to speak from a patient’s perspective at their rare disease showcase in Newcastle Upon Tyne. This was a brilliant/ life changing experience from the people I met and made me realise that I wasn’t alone in living with a rare condition.[/p][p]Their vision as a charity is a world in which all rare diseases have treatments – made together with patients, for patients.[/p][p]“Rare diseases are defined in the EU as conditions affecting less than 1 in 2000 people — though they come much rarer than this. Because of their small patient populations, rare diseases are often assumed to be unimportant. This leads to a lack of support for patients and families, neglect by the medical profession, and little ongoing research into treatments.”[/p][p]“Findacure is here to help. We empower rare disease patient groups through a series of training programmes, and encourage collaboration between rare disease stakeholders to advance research. “[/p][p]I would love your support (even if it’s a £1)[/p][p]Thanks :-) :-) :-)[/p][p][br][/p][p][br][/p][p][br][/p]