About Christopher

Christopher Mull, a 5 year old boy, has Dravet Syndrome, a rare form of epilepsy for which there is currently no cure.  Dravet syndrome is a severe pediatric epilepsy that develops in the first year of life. Children afflicted have a significant impact on their quality of life from very difficult to control seizures, developmental regression and sleep disturbances to profound physical and cognitive delays.

Christopher had his first seizure at 10 weeks of age.  He was admitted to Dallas Children's hospital for 3 days where many tests were performed and all came up normal. The second seizure came when he was 4 months old and again required a 3 day hospital admission at the University of Virginia and resulted again in a normal work up. At 6 months the seizures became regular and more frequent. Since then, Christopher has had thousands of seizures, many emergency room visits, multiple hospital admissions, 2 years on the ketogenic diet and failed medications. Christopher has experienced respiratory failure after seizures which required intubation. Unfortunately children with Dravet are more susceptible to infections; Christopher spent a month in the hospital facing near death from a systemic infection. In all, Christopher has been evaluated by six different neurologists from Chicago to Washington DC and was finally diagnosed with Dravet syndrome in December of 2007.

Fortunately Christopher was diagnosed at a relatively young age - some of these children and families go years and years without finding an answer - just because the syndrome is so rare. Doctor's and parents don't think about it until it is often much later in the course of uncontrolled seizures. The prognosis for treatment for Dravet kids is not good. They do not respond well to drugs, some drugs make the seizures worse (we've experienced this). We have a long, unpredictable future ahead of us.

Christopher's siblings Connor (9), Casey (7) and Callie (3) have a unique understanding of epilepsy and children with special needs. We feel blessed to have an amazing 5 year old who brings joy to our lives every day. He has inspired our family to live each day to it's fullest and to move forward in the face of adversity. He has touched the lives of his siblings who adore him and are an amazing help on his "bad days".  He is forever happy and eagerly greets each passerby with a big "Hi".