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As many of you know all about Ollie I won’t go on too much but Ollie has a rare genetic syndrome called bardet biedl syndrome. 

A bit about BBS 

Bardet-Biedl Syndrome is a rare, recessively inherited ciliopathy which affects approximately 1 in 100,000 babies born. Features of the syndrome include rod-cone dystrophy, a progressive eye disorder that leads to blindness, characterised by tunnel vision and night blindness; obesity; renal abnormalities; developmental delay; speech and language difficulties; extra fingers and/or toes and learning difficulties. The variability in presentation and severity of the syndrome together with the rarity of the condition can lead to delayed diagnosis and a lack of adequate local health care. There are around 560 affected individuals known to us in the UK.

There is at present no cure for Bardet-Biedl Syndrome. Patients have access to NHS specialised multi-disciplinary clinics held in four centres in London and Birmingham. Bardet-Biedl Syndrome UK are third-sector partners in this service.

Like all charities BBS UK needs our help so I am going to work 12-13 hours straight doing nails in my little home salon (my happy place) to raise some much needed cash! 

Thank you for your support.. you will never know how appreciative I am 

Ashley - mummy of 2 amazing boys! 

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