On the 24th August, my grandson Rupert was born sleeping after being diagnosed with Edwards syndrome (Trisomy 18). In his honour, I am running the Great North Run with my sister Becky to raise funds for Soft UK. Feeling helpless in the face of such loss, I found solace in the idea of doing something within my power - running for a cause that is close to my heart.

Although my time with Baby Rupert was brief, the moments I held him were precious beyond words. Running this race is my way of celebrating his short but significant life and supporting other families affected by similar challenges.

Your contribution to this cause will help raise awareness and support research efforts to improve the lives of those impacted by genetic disorders. Join me in honouring Baby Rupert's memory and making a difference. Thank you for your support.

SOFT UK was started to provide a much-needed support network for children and families affected by Pataus' and Edwards' Syndrome and related disorders. Since its humble origins almost 30 years ago, SOFT UK has grown into a much larger organisation run by families for families.

Ninety percent of the volunteers and staff team have a link with Trisomy within their own families, helping to alleviate the isolation that comes with a Trisomy diagnosis.