TORONTO, Sept. 3, 2014 /CNW/ - Donovan Charlong was a baseball loving boy, with a mischievous smile and energy enough to light up his hometown of Paris, Ontario. Just eighteen days before his 12th birthday, on June 10 of this year, he died. A four-year battle with Febrile Infection Related Epilepsy Syndrome (F.I.R.E.S.) had weakened him, so badly he could no longer fight on.
FIRES is an extreme and rare form of epilepsy which affects previously healthy children.
Donovan's seizures could not be controlled with anti-seizure medication. This reality is shared by 30% of the over 300,000 diagnosed epileptics in Canada.
Donovan's mother Melissa Wright has shared the story of his illness and death, to raise awareness of the condition and to help raise funds for epilepsy research. (Read the full story)
FIRES seizures, which affect one in 1,000,000 are non-focal, meaning there is no specific starting or stopping point. This eliminates surgery as a possible treatment path. These seizures damage the cognitive abilities of the brain such as memory or sensory abilities. Donovan lost his sight and ability to walk and talk.
Following stays lasting a total of 10 months, first at McMaster University Medical Centre and then The Holland-Bloorview Kid's Rehabilitation Hospital, Donovan returned home to his family. But he continued to suffer daily seizures. Ms. Wright told us, "On a good day, we only had to deal with three or four seizures."
Gary Collins, Executive Director of Epilepsy Canada said, "Donovan's story deeply affected everyone at Epilepsy Canada. We're awestruck by Melissa's strength and grateful for her willingness share her experience and advocate for epilepsy research."
Epilepsy Canada has established The Donovan Charlong Fund for Epilepsy Research as a tribute to every person who has lost a fight with epilepsy. Donations can be made online at www.epilepsy.ca , by calling Epilepsy Canada at 1-877-734-0873, or by mail. Cheques should be payable to Epilepsy Canada and addressed to Donovan Charlong Fund, Epilepsy Canada, 2900 John Street, Suite 2B, Markham Ontario. L3R 1A8.
Epilepsy Canada was founded in 1966 and annually funds research into new therapies and treatments of epilepsy at leading Canadian research hospitals and universities.
Video with caption: "Video: View Melissa Wright telling the story of Donovan's illness and her family's struggle here.". Video available at: http://youtu.be/HLzaYiixeQw
SOURCE: Epilepsy Canada
For further information: Info: Gary Collins - ga[email protected], Ph: 1-877-734-0873, mobile: 416-3460-1446