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Our daughter Emmy has Bardet Biedl Syndrome (BBS), she is only 8 years old and this syndrome has already had a huge impact on her life and in turn our families.   We are holding a Sponsored Walk/Run on Saturday 3^rd July 2010 at Pitsford Reservoir, which is part of a national fundraising event, organised by the LMBBS Society, (Reg. Charity No: 1027384), a voluntary organisation, primarily supporting people affected by the Laurence Moon Bardet Biedl syndrome. 

This is a rare genetic disorder, which can include visual impairment usually leading to blindness, kidney disease, obesity, learning difficulties and many other problems.  Our daughter Emmy is now registered blind due to her reduced visual field and she has night blindness.  Emmy is now also receiving cane training to help her mobility in dusk/dark evenings and will from now on have to have her kidneys regularly monitored to ensure they are healthy.

We recently spent a weekend at a Conference organised by the LMBBS Charity, this is a chance for all families to meet up and gain vital information and most importantly the chance for the children and adults who have BBS to share experiences and time with others in their situation.  The Society arranges a full conference day with guest speakers who range from Medical Experts in their fields to support experts to help with day to day living.  They also arrange for the Children to have a day out to a theme park and countless entertainment/ activities for them for the evening.  The society is run by volunteers and relies on donations and fundraising to keep going with their vital work.

Coming away from this conference we felt compelled as a family to give something back to this Charity and the remarkable people that voluntarily put so much into the LMBBS Society.  We have decided along with Emmy and her brother and sister to do a sponsored walk around our local country park which is 7 miles.  Emmy herself wants to take part and hopefully will be walking at least half of the distance, please sponsor her or the person walking on her behalf.

 

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So please dig deep and donate now.

 

Thanks for your support.

Claire & Jason

James, Emmy & Holly

 

So please dig deep and donate now.