SUDEP Aware continue Call for Openness on SUDEP at Cycle for Olly Event

SUDEP Aware continued the Call for Openness Campaign at their Cycle for Olly event from 23 to 28 July 2013.  The event saw a team of four cyclists pedal over 650 kilometers from Montreal, Quebec to Toronto, Ontario in memory of Olivia Mullin (Olly), who died six years ago from SUDEP.  

Olivia was just 31 when she died.  She was married with two small children.  She lived with epilepsy for twenty years and was a very active, sporty, businesswoman, wife and mother.  

After Olivia’s death her older sister Tamzin Jeffs went on to co-found SUDEP Aware with Dr Elizabeth Donner, a paediatric neurologist at the Hospital for Sick Children. SUDEP Aware is a not-for-profit organization dedicated to raising awareness and understanding of SUDEP with the goal of finding its cause(s) and prevention.

Tamzin was herself diagnosed with a different form of epilepsy six years before Ollivia’s death.  She says the family did not know about SUDEP when Olivia died. Tamzin says she found no information on SUDEP after searching websites in North America at that time.  She says she lives with epilepsy day in and day out and that people need to be told about SUDEP when diagnosed with epilepsy. She said Olly was her younger sister and she knew she struggled with her epilepsy. She added that: “the most tragic thing was that she lived life to the fullest …had she have known about SUDEP I know she would still be here today.”

To help raise awareness, SUDEP Aware created the Cycle for Olly, a bike ride across the province and parts of Quebec.  During the Cycle, local organizations, Epilepsy Kingston and Epilepsy Durham hosted meet-and-greets along the 650-kilometre route in an effort to raise awareness of SUDEP.  

Tamzin, Olly’s father Paul Jeffs (67) and brother-in-law David Himsworth (42) took part in the cycle this year.  Others include Deb Fawcett, a mum who lost her 15 year old daughter Jordan to SUDEP in 2010.   

Deb says they were never told about risk when Jordan was diagnosed: “Jordan’s story with epilepsy is very short. She was diagnosed just shy of 12 months before she passed away,” she added that Jordan was trying out for a rep basketball team, went to do a lay-up and collapsed prompting scans and tests to discover why.  Jordan was then diagnosed and put on medication.  She remained seizure free for about six months before her death.

Deb explained: “We were just learning what epilepsy was all about, on November 2, we were all up and Jordan wasn’t up and getting ready for school. My husband went down to her room and we found our princess lifeless.”

SUDEP Aware co-founder Dr. Donner says: “The majority of people with epilepsy live long and healthy lives. We do know some good ways to reduce the possibility of death,” she added: “People need to understand by having seizures, they’re actually putting their lives at risk,”. She highlighted that many times when people don’t take their medication they are putting themselves at risk.  This could lead to more seizures and thus increase the risk of SUDEP.

Riders cycled roughly 100 kilometres per day and camped out overnight. Oshawa Cycling Club members helped guide cyclists through Durham waterfront trail on the last day of the ride. 

The event received good local media coverage with the article ‘Cycling to reveal a hidden threat’ published in The Oshawa Express.  The team succeeded in bringing some much needed public awareness to SUDEP and over $8,500 for the not-for-profit organization SUDEP Aware (www.sudepaware.org).