Hey I am Sophie! I cannot believe I am saying this but I am running the London Marathon 2022! 

I have been offered a place to represent an amazing charity that is very close to my heart, Gene People UK. 

If you know me, you would of met or at least know about my youngest brother Sonny; he is my shadow, best friend and absolute inspiration. Sonny was extremely poorly as a baby and throughout his childhood. He was constantly in and out of hospitals, undergoing operations, having specialist consultations, completing hours of therapy, but no one could tell us what was wrong, just that he would probably never walk or talk and that we were lucky for him to have survived. We were told he had a genetic condition but it was so rare that they could not diagnose it. Sonny eventually gained a diagnosis at the age of 9....a rare genetic disorder called ‘Coffin Siris Syndrome’. Sonny defied all odds and is living life to the full. Throughout this time my family really struggled with finding the right information, answers, referrals, support and guidance through the very big genetic disorder world, and I wish we had known about Gene People Uk.  

GPUK’s mission is to be the leading source for information and support to anybody that has been impacted by a genetic condition. They currently run the only free genetics councillor-led helpline in the UK. The counsellors may not know the answer to every question right away but they are committed to finding the correct next steps for everyone who calls and will never turn anyone away. They offer a safe, non-judgmental space for you to have all your questions answered and to discuss your feelings and fears about a genetic condition. Their website is full of helpful, digestible information, links and advice on a range of relevant topics including therapies, funding, healthcare systems, schooling and tips for daily life. GPUK is an incredible charity that will support individuals, families and friends to navigate their way through the genetic condition world and make it that bit less overwhelming.  

For anyone affected by a genetic disorder. YOU ARE NOT ON YOUR OWN.