Rett syndrome is a rare neurodevelopmental disorder resulting in physical and intellectual disability. It affects girls almost exclusively – affecting one in ten thousand births. Everyone affected is severely and multiply disabled. It is characterised by normal early development followed a period of regression where skills are lost.

My sister Rachel has Rett Syndrome. I am fundraising on behalf of the Rett Syndrome Association of Ireland, which has been of huge importance and help to my sister and whose dependence on was very beneficial for our family.