The story of Jodie
Frazer, 8, from Scotland was born with a rare congenital neuromuscular disease, Nemaline Rod Disease – however for 6 years it was undetected and often referred to as global development delay, until identified as a neuromuscular disease and 2019, then confirmed as Nemaline Rod Disease in April 2021 following a muscle biopsy.
Frazer is a joy to all who know him. Polite, confident, courageous, resilient and a wonderful son, brother and friend.
Frazer loves all things WIFI, powerchair football, baking, unicorns, cuddles and his best friend Nathan.
Frazers symptoms include generalised muscle weakness particularly affecting his facial muscles, core muscles neck and leg muscles, he often experiences fatigue and pain, and has difficulty walking meaning he requires the support of a wheelchair to get around. Frazer suffers from involuntary muscle spasms, an eye movement disorder, lordosis, scoliosis, hypermobile joints, a delayed swallow initiation and hypoventilation – requiring overnight ventilation.
Frazers condition is life limiting, there is no reasonable hope of a cure to Nemaline Rod Disease however with the support of his incredible Multidisciplinary neuromuscular team and his community physiotherapist – Frazer does not let his diagnosis stop him from being a very typical 8 year old boy – just with a lot of rest in between adventure.
Frazer dreams of being a doctor when he grows up because he wants to help people, just like his doctors have helped him.