Inspired by her son Jack who lives with epilepsy, Leah and friends Anita, Laura and Toni recently took on the 25K Broads Walk Challenge in aid of Epilepsy Research UK. We caught up with Leah to discuss the disruptive impact of the conditioning on family life and why she is committed to supporting vital research into epilepsy.
When my son Jack was four months old, he began making some unusual movements – crunching up his core and throwing his arms out to the side. After a week or so we took him to the doctors to describe the activity. They said it sounded like some sort of wind, stomach cramps or similar. We tried a treatment for wind, but his actions continued.
Unfortunately, we know that Jack sustained a brain injury at birth. This eventually led to the diagnosis of infantile spasms, and later epilepsy and global developmental delay (GDD). He has just turned seven, is still non-verbal and only started to take steps about two years ago. The combination of GDD and epilepsy means that Jack is at a special needs school, and we worry if he’ll ever be able to live independently or have a job. We think twice about things like booking a holiday: What if he has a bad seizure while we are away? As Jack has never known any different, he takes it all in his stride and is a very happy little boy. Although he cannot tell us if he can feel a seizure coming on, he can certainly still communicate his needs.