I’ll be running the Sheffield Half Marathon this year to raise money for Unique (Rare Chromosome Disorder Support Group). 

Our son, Toby, who will be six in June, has a rare genetic disorder, 2q23.1 microdeletion syndrome shared by only about a hundred others in the world. This deletion has affected much of Toby’s development, from his profound learning difficulties, speech and language delay, behavioural problems to his seizures. Whilst daily life can be challenging, as a family we have learned to adapt. Well we’re still learning really!

Toby is a big bundle of extreme joy, noise and destruction! He has a zest for life that you just can’t avoid! He likes his way of doing things and best of luck if you get in his way. We’re immensely proud of Toby and how far he’s come over the years, particularly recently with his transition into school. He has two phenomenal siblings who support and amuse him every day. 

We’re grateful to Unique for their support, without whom we would be very much in the dark about Toby’s condition and what to expect in the future.