In January 2025, at 7 years old, our amazing daughter Phoebe was diagnosed with Williams syndrome.

Williams syndrome is a rare genetic neurodevelopmental condition, affecting approximately 1 in 18,000 people. It is caused by a spontaneous microdeletion on chromosome 7 and is not typically inherited.

People with Williams syndrome are often known for their huge hearts, infectious friendliness, and love of music and connection, but the condition also comes with significant medical, developmental, and learning challenges, including heart conditions and the need for lifelong support.

To help raise awareness and support for Williams syndrome, I will be taking part in “100K IN MAY FOR WILLIAMS SYNDROME” which will consist of running a minimum of 100km throughout May for Williams Syndrome Awareness Month. I’ve also signed up for the Bognor 10K on May 17th as part of this journey.

Every kilometre is for Phoebe — and for every individual and family navigating life with Williams syndrome.

Any donation, big or small, helps:

• Raise awareness of this rare condition

• Support families and advocacy

• Contribute to vital resources and research

Thank you so much for supporting Phoebe, our family, and the Williams syndrome community

Small deletion. Big hearts. ♥️

#WilliamsSyndromeAwarenessMonth