I'm running The London Marathon on 23rd April 2023 to raise money for The Williams Syndrome Foundation in memory of my nephew Freddie. 

Williams Syndrome is a rare congenital disorder that occurs randomly and affects around one in 18,000 people in the UK. It’s non-hereditary and causes a range of medical and neuro developmental problems due to a microdeletion of genetic material from a specific region of chromosome 7. Most concerningly for Freddie it caused a problem with his heart which resulted in his sudden and unexpected death on 9th August 2020 at just 4 months old. 

Freddie was an adored little boy who came into our lives at the beginning of the pandemic. He spent much of his short life in and out of hospital whilst Jill and Giannis pushed for genetic testing to diagnose Williams Syndrome. His heart condition was considered mild, however we now know there were additional problems which were not identified during investigations. Despite going through so much Freddie kept smiling, and he was the happiest, most loving and determined little boy who we’re so fortunate to have had in our lives. Freddie is missed every day, and remembering his fighting spirit will help me through the weeks of training to the finish line, whilst raising vital funds for an important cause.

The WSF was formed in 1980, with aims of promoting research and providing support to families with affected children. It acts as an information and advisory service and keeps parents in touch through magazines, events and a nationwide regional network, as well as funding holidays for WS people every year. It also keeps a register of WS cases and provides access to professionals to promote research to improve the lives of the WS population. The Foundation has provided incredible support to Jill, Giannis and Elsie through their expert medical panel and have also allowed them to access a vital support network from Freddie’s diagnosis through to this day. The charity is small, and any sponsorship donations will be so valuable and appreciated in helping them continue their essential work.