This is Candon Westervelt. He is a 4th grade student at Elm Street Elementary in Waverly, New York. He is a funny, huge-hearted, intelligent, physically fit and active redheaded boy. He had zero warning signs of what was to come when he had his first seizure in October 2010, two weeks before his 7th birthday.
Two-and-a-half years of repeat hospitalizations, travels all over the U.S. for testing and opinions, hundreds of needle pokes, medications, more seizures, and 4 brain surgeries later, Candon has been diagnosed with Rasmussen’s Encephalitis (RE).
RE is a rare neurological disease that causes intractable epileptic seizures, cognitive deficits, and paralysis of ½ of the body. The disease typically ramps up over a 1 to 2 year period, during which time one half of the body starts to become useless – hemiplegic – and epileptic seizures continue with little if any warning.
RE typically affects previously normal children between two and ten years of age. An unusual feature of the disease that sets it apart from other inflammatory diseases of the central nervous system is that it is usually confined to one hemisphere of the brain. RE is resistant to standard surgical hemispherectomy – the complete removal of the affected side of the brain. Presently there is no known cause, and the only cure, a hemispherectomy.
Candon is under medical treatment at John Hopkins in Baltimore, the leader of treatment and diagnosis of RE. Candon’s surgery was on April 25, 2013. He will have intensive inpatient rehab for several months, followed by years of ongoing physical therapy. All reports are that he is making a remarkable recovery and surprising his therapists every day!
Candon has taken this in stride every step of the way, never complains, and provides his family with strength through this difficult time. He has a very, “well, let’s get this done,” attitude. He designed today’s t-shirt with the help of his teacher and they immediately sold out. All proceeds from the sale are going to research and finding a cure for RE. All are hopeful that after surgery he will be seizure free, and he can proceed with life on an uphill journey, defying odds, and maintaining and regaining his bright, cheerful, and jokester red-headed attitude he has always had!
Candon will be returning home today and there is a huge group of people organized to welcome him back home to Lockwood. Folks are gathering along Main Street in Lockwood between 5 and 6 today and wearing this t-shirt in support of Candon’s recovery. Lockwood is on State Route 34 between Waverly and Van Etten.
For continued updates throughout his road to recovery go to www.caringbridge.org/visit/cwestervelt.
The Spaghetti dinner is happening at the Waverly Barton Fire Station on William Donnelly Parkway in Waverly. It’s from 5-8 Saturday, May 18th. Ofor info or to donate cal (607)598-2358.
Dave Curtis is a family friend and gives us the latest in the podcast: