My son, Preston Raynor was born November 1, 2001 a healthy baby boy. soon after his birth I noticed his leg would “twitch” frequently. his Pediatrician thought he would outgrow it – Preston appeared a normal, healthy baby! But he didn’t outgrow it. The twitches turned into seizures, different kinds and sometimes hundreds a day.
We began desperately trying many anti-epileptic drugs, all with life-threatening side effects. Nothing would stop or slow the seizures & I watched helplessly my son regress and not develop any new language or brain development. When he was 6 years old, Dr. Robert Greenwood at The University of NC at Chapel Hill, diagnosed Preston with Dravet Syndrome- a rare gene mutation.
There was and still is NO cure. As I read the descriptive word “catastrophic” form of epilepsy I was devastated.
This June, myself, Preston, and his sister Sydney, are moving from North Carolina to Colorado for Preston to have access to a medical form of cannabis proven to greatly improve the life of children stricken with Dravet Syndrome.
We are leaving our home, our family, our work, doctors & nurses and a community of friends who are all helping us now make this move possible. This was a drastic decision we should have never had to make! His prognosis is dismal and uncertain. A sadder prognosis is not allowing us the choice & opportunity to help him live the quality of life everyone deserves! I would like to ask the world – what are YOU living for day to day? Most people with families say their children; others, more likely, themselves. Would YOU try a medicinal oil derived from a century old plant to help yourself or someone you love?
We are Looking forward and Colorado bound in hope of a new seizure-free life for Preston and us all!