So me and my friends have decide to take on a challenge that will consist of riding 100km in the month of June to raise awareness for my daughters disability that has impacted so many families but not much is said or shared about.

My daughter anayah was born with a genetic disorder called Bardet Biedl Syndrome

Its a very rare condition and only 1 in 100.000 babies are born with it.

Bardet Biedl syndrome (short BBS ) effects many parts of the body, its effects include:

-obesity

-vision loss

-additional fingers and toes

-learning disability

-speech delay

-kidney failure

At present there is no cure for BBS and multi-disciplinary (MD) care is needed .

There is only one registered charity that provides support for people with BBS and their families.

This charity is doing an amazing job and is making a big difference.

But of course they need funding to continue supporting them.

So i am asking my friends and family to please help me out and raise money for the charity and to spread awareness.

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.