My daughter Lily was diagnosed in 2010 aged 3, with Smith-Magenis syndrome (SMS). At the time there was very limited information available and we were handed a printout from Wikipedia from our pediatrician. We were abandoned to find our own support and services and given a very bleak prognosis for her future. Not one healthcare or educational professional working with us had ever heard of the syndrome, so they were not equipped to help support her needs. We felt totally isolated.

I first became involved with the SMS Foundation in 2013, initially as a trustee and later as an employee. The support and understanding of the SMS Foundation have been invaluable to my family. Suddenly we didn't feel so alone on our journey, and we were able to access information to help support the needs of our daughter. 

My mission has always been to help support the needs of families living with SMS, especially at the diagnosis stage. No one should ever be handed out a Wikipedia printout about the diagnosis of their child or adult. Healthcare and educational professionals need awareness of this hugely complex syndrome. No one living with SMS should ever, ever feel isolated or abandoned. Every step of my marathon will be a step closer to achieving my mission. 

About the SMS Foundation...

The SMS Foundation is here to make sure no one living with SMS feels isolated or alone. We are here to provide practical guidance, emotional support, and a helping hand for those who need us the most. We are here to empower those living with SMS to have the best quality of life possible. We want everyone living with SMS to have the chance of a fulfilling future. But we can't do this without financial support. Every penny raised by our LLHM 2022 runners will go towards supporting families in the UK living with SMS. We want to be able to bring families together. We want to make sure each family has a local network. We want to create education and awareness for schools. We want to make our website accessible for all. We want to sponsor research into SMS for the future. By supporting our runners you are supporting us and raising funds for some of the most vulnerable members of our SMS community Thank you so much for your support!