It’s that time again, the Great Scottish Run and once again I have signed up. For the last 2 years I have ran in memory of my Uncle John and raised funds for Cancer Research.
This year I have decided to raise the awareness of CHARGE Syndrome and the plight of little Feargus.
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
For Feargus this means, he has Coloboma in both his eyes therefore registered blind, he is deaf in his left ear, he has a bilateral cleft lip & palate, TBM which means his airway is floppy and collapses meaning he can't breathe and works very hard to keep breathing, due to Malacia he has sticky lungs which collapse if he cries for too long and needs re-ventilated, he is nil by mouth because when he feeds he aspirates meaning the feed goes into his lungs so he is fed via a tube. He has truncus arteriosus of the heart which is severe rare congenital heart disease. Due to the severity of his heart disease he has a life expectancy of 25 years.
He has so many complex and serious medical conditions but he is determined to prove everyone wrong and fights with every breathe he takes.
So please help me in raising some funds to provide Feargus with the care and equipment he needs to ensure the time he has with his parents and family are as comfortable as possible. Thank you.

💛 ‪#‎CHARGEONFEARGUS‬