I'm running the Manchester Marathon on 7th April 2019 in memory of my Mum and to support BBS UK - a charity that was close to her heart and is to mine too.
Bardet-Biedl Syndrome (BBS) is a genetic disorder that affects many parts of the body. Vision loss is one of the main features and children with BBS can be blind by adolescence or early adulthood. There are many other characteristics of BBS including abnormal weight gain and obesity, learning disabilities, kidney abnormalities, impaired speech, delayed development of motor skills, behavioural problems, distinctive facial features, dental abnormalities, fused or additional fingers or toes and a number of other potential conditions.
Evie, in the photo above, is my cousins daughter and is a fabulous little girl who was born with BBS. Lindsay, Evie's Mum says this about BBS:
'I can hand on heart say that all the people I've met that live with BBS are fantastic. They don't let this syndrome get them down. They get on with life. Evie is one of the approximately 500 people in the UK with this syndrome, and if you've met her, you'll know what a truly wonderful little girl she is, despite all of her problems.'
BBS UK are the only charity supporting children and adults with BBS and their families in the UK - support which is a lifeline to the individuals and families affected by this disorder. They also work to advance awareness of this very rare condition both amongst medical and educational professionals and the general public.
If you can support me in raising as much as possible for this small but very special Charity I would be so grateful and I know my Mum would be so touched that this was being done in her memory. Children like Evie are getting on with life despite the many obstacles they have to face living with BBS and they and their families need our support.
Thank you so much. xx
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.