Preston has a catastrophic form of epilepsy called Dravet Syndrome. His family will be moving to CO this summer to start him on Charlottes web. Preston has been having hundreds of seizures since birth, with his first grand mal seizure at 3 months old. He currently has over 400 seizures a day, while still taking over 5 seizure meds a day, many of these meds come with horrible side effects. He has exhausted all medicines and treatments. Please help this family raise money for treatment and funds to move.
Prestons faces of Cannabis
Preston Blake Raynor was born November 1, 2001 a healthy baby boy. I am forever now referred to as "Oma" and my husband, Don, as Paw-Paw as Preston is our first grandchild. Soon after his birth, we noticed his leg would "twitch" repeatedly. Being a pediatric nurse at the time, we had every doctor in th egroup examine Preston to determine the cause. But the diagnosis was always the same-a normal healthy baby. Still, Maternal instincts told us differently but we hoped he would out-grow it. At three months he had his first official seizure. We anxiously called for an emergency appointment with our town's only pediatric neurologist who thankfully was a family friend from church. He worked us in but could not give us answers, only to wait and see if it happened again. Several weeks later when it did occur, Preston was hospitalized and the neurologist started him on Depakote. That was the beginning of our long, difficult journey.
Preston's seizure activity changed as he grew. Not only did he have Grand Mal seizures but all kinds including hundreds of absence per day(staring spells, eye fluttering, jerking). Any time he would start to get a cold, fever, or virus he would have non-stop seizures. We knew we were racing against time as the excessive seizure activity was robbing him of developmental milestones and preventing any new language and brian development. His third birthday came and went. For some reason I thought when he magically turned three the seizures would go away. Still with no diagnosis other than Epilepsy he received a surgical Vagus Nerve Stimulator to hopefully lessen the severity of the Grand Mal seizures. We also traveled out of town for a week long hospitalization to begin the Keto genic diet- a rigid, high fat, low carb diet know to help some kids with Epilepsy. After 6 months we gave it up as it didn't help Preston; all this while trying close to 15 or more different anti epileptic medications and combinations of drugs with no success in seizure control. We began taking him to the University of NC at Chapel Hill Clinic of Neurology and seeing Dr. Robert Greenwood.
At age 6, with genetic testing we finally had our answer-SCN1A Gene Mutation or Dravet Syndrome. Somehow us knowing we were relieved but reality set in, there is NC cure. One particular descriptive word stood out as I read, "catastrophic" form of Epilepsy.
Today at age 12 Preston has mental abilities of around a 4 year old. He sometimes comprehends what is communicated to him but is unable to verbalize other than through single words or gestures. He knows NO fear and cannot be left alone, ever. He is a boy and has a passion for tractors and lawn mowers. This love was nurtured by his paw-paw riding on the tractor and lawnmower. Paw-paw (my husband Don) has the least amount of time available but always finds time to spend with Preston.
Preston is a real trooper and very brave but isn't the only trooper on our team. A young doctor intern once asked us "who takes care of him?" The answer is WE all do with the loving help from his favorite Aunt Jessica, several wonderful, dedicated Bayada nurses, Daddy Grant and his parents, countless teachers and therapist. And then there is Sydney, Preston's 8 year old sister. She is really like antoher "mamma" and has had to grow up quickly in a sometimes scary enviroment. She is fast to help out and is protective of her brother. And while Sydney has witnessed scary, life-threatening events she has also witnessed her mom and our family never giving up hope, loving and caring for them both unconditionaly. We are blessed to have them both in out lives. Our daughter, Ana, Preston's mom, has never given up tirelessly and unselfishly attending to his constant care.
Preston's love is contagious- he has touched so many people and we hope his story touches your heart as well. Please support us as our journey is taking part of our family to Colorado hopefully this summer to seek a promising treatment for children with seizures.
HOPE, FAITH, LOVE, CURE EPILESPY
THE RAYNOR AND WATSON FAMILY
HERE IS PRESTON ON OUR VIST TO COLORADO SPIRNGS BACK IN APRIL WITH THE CAMERA CREW FROM THE DENVER POST.
WE HAVE A FUNDRAISER BENEFIT EVENT COMING UP ON MAY 31 FROM 5-11 AT FLIP FLOPS BAR AND GRILL IN GREENSBORO, NC
Preston on the tractor
UPDATE: we are starting to pack, we plan on leaving on June 22 and take 3 days to travel. Preston has been the same with his seizures, with the heat starting we do anticipate an increse of seizures.
Here is our latest article.
We had an amazing turn out for our Hope For Preston fundraiser at Flip Flops Bar and Grill, we raised $6,594.00
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