National Society for Epilepsy - Ross's Story
Our second son Ross was born in May 2008, but right from the first day it was obvious
that something was seriously wrong as he was having several seizures per day. Ross
spent his first seven weeks in neonatal intensive care and children’s neurological
ward.
Ross endured an induced coma, brain scans, repeated monitoring of brain activity,
body fluid tests and a series of trial-and-error style anti-epilepsy drug combinations
to try to control his seizures, which peaked at 90 per day.
Only when steroids were added to the cocktail of drugs he was already on, did Ross’s
seizures stop and we were allowed to take him home, which was great. However, repeated
brain-activity monitoring shows that while Ross’s seizures are under control and
he is growing physically, his brain activity remains chaotic and he is not developing
mentally. This leads to very random sleep and feeding patterns, on top of the agitation
caused by the drugs, by perhaps the hardest thing is that his brain does not understand
what his eyes are seeing so he does not respond to us at all, even the very doting
attention of his 3 year old brother Fin.
We were amazed to discover how little the medical professions knows about epilepsy,
and the infant brain in particular. As a result we wanted to feel that we were doing
something to help so started raising money for the National Society for Epilepsy,
a charity which funds research into all aspects of epilepsy treatment and care.
My brother William and his kite-surfing buddies are putting a lot of effort into
raising money for this, and 3 other fantastic charities with their kite challenge
across the Irish Sea. I can’t emphasis enough how grateful Clair and I are for their
support and help. Thanks to all those involved, and to everyone who sponsors them.
Karl