My eldest son, Iestyn, aged 28, was born with SEPN1 Rigid Spine Syndrome, which is a very rare form of Muscular Dystrophy, and  is slowly progressive, but he was only diagnosed with this in his early teens.  The main symptoms of this condition are Scoliosis, respirator problems and progressive weakening and wasting away of the muscles.  His younger years were non-stop hospital admissions, appointments as well as 3 spinal operations and now regular spinal injections.  He struggles on a daily basis with the simplest of everyday tasks that we all take for granted and is in constant pain when the spinal injections don't work. He has had to resort to using a walking stick for his stability and safety.  He never complains and always has a smile on his face and is more interested in everyone else's wellbeing than his own.  I have set myself this challenge of running the Cardiff Half Marathon on Sunday 1 October to raise money for Muscular Dystrophy which is the charity Iestyn's has chosen. 

Iestyn is such an amazing and remarkable you man, I am so very proud of him, he never gives up and keeps battling through, he is my hero and my inspiration in life.