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Steven Roberts avatar
Steven Roberts

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running the London Marathon again for Stickler Syndrome Support Group because they need all the support they can get.

71 %
£1,438.57
raised of £2,000 target
by 10 supporters
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  • Event: Virgin London Marathon 2013, 21 Apr 2013

Stickler Syndrome Support Group

Stickler Syndrome Support Group aims to raise awareness of Stickler syndrome amongst the medical profession; promote the value of early diagnosis for adults and children with the condition to help preserve vision, particularly the prevention of blindness in children and adults.

Charity Registration No. 1060421

Story

 

Thanks for taking the time to visit my JustGiving page. Although this is linked to London Marathon 2013 I have also completed the Bath Half Marathon on 3rd March 2013 and South Yorkshire Half Marathon on 17th March 2013.

I have also completed 3 hours non stop on a treadmill on 15th March 2013 at The Alexandra WMC, Royston during a fundraising event.

 

Me and Harvey will complete this fundraising running challenge by running together in the Leeds Mini Fun Run on 12th May 2013. Myself and Harvey will complete the 1.5km together and he will recieve his own medal.

 

On 27th January 2008 my son Harvey Lee Roberts was born. Without a doubt the best day of my life, but soon turned into a nightmare as within hours of holding my son for the very first time he went blue and was rushed to intensive care. After what seemed like days of waiting we finally got briefed by a consultant. Harvey was diagnosed with a cleft palate (a slit in the roof of his mouth) on top of this due to other symptoms Stickler Syndrome was mentioned. Harvey was released from intensive care 4 days later and we took him home still very unsure about what was going on. It was a further 3 weeks later when Harvey had his vision checked that it was clinically confirmed that Harvey had Stickler Syndrome. Harvey is very short sighted, but due to the excellent eye team at Leeds hospital from the age of 10 weeks old he has worn contact lenses. Harvey suffers joint pain daily and often has dips in his hearing. Again thanks to the team at Leeds hospital Harvey has under gone a successful cleft palate repair at the beginning of 2011 and is now undergoing intense speech therapy. The Stickler Syndrome Support Group (SSSG) has provided not only support but invaluable information and advice to me and Harvey’s wider family. I know Harvey will gain a lot from this group in the future and I really want to help make sure it’s there for him and other suffers when they need it. The work the SSSG do fully relies on donations. For more information regarding Stickler Syndrome or the SSSG please visit http://www.stickler.org.uk/info.htm.

 

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So please dig deep and donate now.

Photos

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  • Me and Harvey
  • London Marathon 2012
  • London Marathon 2012 +8

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