Frankie had his first seizure at 6weeks and was regularly blue lighted and hospitalised in his first year of life. He was on life support at a very tender 4months old and finally at 11months old he was diagnosed with Dravet Syndrome. Dravet is a very rare, life threatening, life limiting neurological condition, consisting of severe and prolonged seizures along with many other challenges such as speech and mobility. Frankie can have multiple seizures per day which require medical intervention, his seizures are hard to control and very unpredictable. To put this into perspective one seizure is the equivalent of an adult running a marathon and Frankie has been known to be in double figures per day on occasions.

Frankie faces many challenges each day however he is the happiest and most inspirational boy you will ever meet. Anyone who meets Frankie never forgets him and they feel truly blessed and inspired as he is the most loving and special boy and he teaches you the true value of life. If Frankie can face life head on with a smile every single day then we will most definitely face this challenge head on with the same bravery that he does.