Candon W.

New York

Birth Date -  October 28, 03

Main Diagnosis -  Rasmussen's Encephalitis

THEME:   Dogs

Candon's Story

Candon was 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 US for testing and opinions, (Upstate NY to Baltimore MD, to Rochester MN, to Birmingham Al), hundreds of needle pokes, medications, seizures, and 4 brain surgeries later, Candon was diagnosed with Rasmussen’s Encephalitis (RE) November 2012.

Rasmussen's encephalitis (RE) is a rare (1 in a million) neurological disease that causes intractable epileptic seizures, cognitive deficits and paralysis of 1/2 of the body. The disease process 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 anti-seizure medicines thus making possible the only known "cure" for the condition - a surgical hemispherectomy - the complete removal of the affected side of the brain. Presently there is no known cause, and the only cure, a hemispherectomy, to get rid of the disease and the over 200 seizures per day Candon experienced.

Candon is under medical treatment at John Hopkins in Baltimore, the leader of treatment and diagnosis of RE. Candon’s 5th surgery, his hemispherectomy was April 25, 2013, where his neurosurgeon removed the entire right half of his brain. He was in intensive inpatient rehab for 2 weeks, followed by continued outpatient physical and occupational therapy.

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 does not dwell on how the disease has changed his life both before and after his hemispherectomy. Candon has been seizure free since his 5th surgery, his hemispherectomy, and now is proceeding through life on an uphill journey, defying the odds, and maintaining and has regained his bright and cheerful and jokester red headed attitude he has always had!!

"THANK YOU"

Candon just received a hand stitched quilt from an organization called "Love Quilts". Here we are 10 months post op, and people are still doing such wonderful things for him. He is so incredibly lucky in so many ways!   Thank you ladies of Love quilts!!"