I am taking part in the Great North Run along with a friend for my daughter Grace. As many of you are aware at just 4 months old Grace was diagnosed with Rett syndrome. Rett Uk we're there for us as a family when we needed the support the most and have been such a support to myself, Rachel and our little girl especially over the last few months as Graces regression has really took hold of her. I will do anything in my power to raise awareness and funds for Rett uk to help us and other families living with Rett syndrome.

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support in day to day life.

Rett UK is there to pick up the pieces; emotional support, high quality, accurate advice & information, advocacy, reducing isolation, empowering families, building emotional resilience and helping the person with Rett syndrome live a life worth living.