VETPARTNERS Director of Clinical Research and Excellence in Practice Rachel Dean is gearing up for the race of her life for a cause closest to her heart.
Rach will be running this year’s TCS London Marathon on April 26th to raise money and awareness for a charity called Gene People.
Her 12-year-old son Mikey has Coffin Siris Syndrome (CSS), a rare genetic condition that leads to complex, multiple severe disabilities. Mikey’s biggest challenge is Intellectual Disability, which means he struggles to understand, communicate and participate in everyday activities. He also has physical disabilities that affect his strength, co-ordination and balance. Everything is harder for Mikey, from brushing his teeth to playing his beloved football.
Gene People runs a genetic counsellor-led helpline for those affected by a genetic condition and their families and supports a partnership network of patient organisations working with those with genetic conditions.
They also provide advice and support for families to enable the right healthcare, education and social needs to be met for people with complex needs associated with rare conditions.
Rach said: “Navigating life with a son who has a rare condition that is poorly understood is incredibly complex. From the moment Mikey stopped breathing at six hours old, due to muscle weakness, we knew something was wrong and we entered a whole new world.
“Five-and-a-half years later, he was diagnosed with CSS. The Gene People support and provide information for families like ours, before and after diagnosis.
Mikey joins Rach on training runs
“Sport is a huge part of Mikey’s life and playing PAN disability football with Burton Albion Community Trust is his greatest passion. He also joins me on a run sometimes. By running the London Marathon, I hope to show Mikey that anything is possible – even running your first marathon in your 50s!”
By taking on the 26-mile challenge, Rachel hopes to raise thousands of pounds, as well as increase understanding of Intellectual Disability.
Rachel added: “Many people haven’t even heard the term before so to understand it better we need a conversation where people can ask questions.
“Mikey is 12 on the outside but on the inside, he is more like a four-year-old socially and emotionally, and he doesn’t understand most of what is said to him or what is going around him. He needs a lot of support, patience and kindness.”
VetPartners colleagues can donate to Rach’s TCS London Marathon fundraising page here: Gene People: Rach’s run for Rare Diseases and Intellectual Disabilities
For VetPartners media enquiries, please contact Amanda Little, PR and Communications Director, at [email protected] or 07970 198492