.  For those of you who know my family know that my sweet boy Henry had his first seizure at the age of four months. By the age of six months he was diagnosed with the SCN1A mutation. This gene mutation is a spectrum of difficult to control forms of epilepsy. With an 80% chance of him having Dravet Syndrome. This syndrome comes with uncontrollable prolonged seizures, as well as developmental delayments and physical concerns. Typically the seizures tend to get worse between the ages of two and ten. Developmental delayments tend to arise between 18 to 24 months. 

In order for Henry to receive the diagnosis of Dravet syndrome, we are waiting for any form of delayment to arise. So every day is like waiting for the shoe to drop due to him being 19 months. With the long list of Appointments, from his neurology team at Sick Kids, his pediatrician, his occupational therapist, his speech therapist and his physiotherapist, Henry remains Henry. 

This little soul has taught me so much in his short time with us. His courage, his strength and his endless love for life. But most importantly he has taught me a parent’s love is boundless. He has endured and overcome so much in his short time with us. His medical complexities has tested my strength more times than I can count. And proven his dad and I will walk through fire for any of our babies. 

His neurology team keeps telling us that Henry has “great” seizure control but to me one seizure is too many. 

June 24th is Dravet syndrome awareness day. Each year families and friends raise money to support research funding to help find a cure. Dye it for Dravet is one fundraiser where the person raises money to dye their hair purple (purple is the international colour for epilepsy) I will #dyeitfordravet to support all those affected by this catastrophically life changing syndrome. And for the parents/caregivers whom would give anything to change places with their child.