PRESTON

blogPreston

 

PRESTON

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!

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One thought on “PRESTON

  1. Hi,
    My son Michael has Doose Syndrome and is regressing drastically. He could have over 100 seizures a day and can not go to school without wearing his helmet. He is 7 years old and has been diagnosed since he was 2 and a half years old. We live in Raleigh NC and are in the process of selling our house and moving to Colorado. He is on the list for October Harvest and we are keeping our fingers crossed that this will work for him. It is so unfair to leave a life we have been building here for years because they just don’t wanna look beyond their nonsensical red tape… But we will do whatever it takes for our son to get even a tenth of a normal and safe life. Good luck on your journey we will be joining soon!

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