My son, Ben, has BBS (Bardet Biedl Syndrome) - a rare, inherited genetic disease. It's why he is autistic, why he was born with an extra finger and why he is losing his eyesight - expecting to be completely blind within the next 5 years. Other symptoms include hyperphagia, NASH (non-alcoholic sclerosis of the liver) and, a couple he has so far avoided: kidney failure and diabetes.

There is no cure.

Genetic research is ongoing and although it'll be too late for Ben, there is reasonable hope that loss of eyesight can be slowed down for the next generation.

Please give generously to this page for BBS-UK, a charity which does an amazing job of supporting people with BBS and their families as they learn how to live with various aspects of this unforgiving condition.

And now for the official BBS-UK information:

Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome (BBS), their families and carers in the UK. We are a user led organisation, represented by adults with BBS and parents of children with BBS.

We support over 640 people diagnosed with BBS and their families; along with professionals involved in all aspects of the care and support of people with BBS in the UK.

Our vision is for people with Bardet-Biedl Syndrome to understand their condition, to feel valued and to thrive.