Thanks for taking the time to visit my JustGiving page.

This page is linked to the London Marathon, but I'm actually running the Bath Half Marathon on 11/03/2012, then the South Yorkshire Half Marathon on 18/03/2012 followed by the London Marathon on 22/04/2012 thats 53 miles!

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.

Also see http://www.yorkshirepost.co.uk/lifestyle/health-and-family/dad-s-run-for-support-group-1-4324936

 

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