2018 Feature Stories - SUDEP
Our theme for 2018 is SUDEP, Sudden Unexpected Death in EPilepsy. By no means is this an easy subject and it is something that triggers fear in those living with epilepsy, yet many living with epilepsy have no knowledge of SUDEP. During the weeks leading up to Katie's Run 2018, we will be sharing stories from families and individuals bereaved by SUDEP. We will honour the loved ones lost by raising awareness, sharing possible ways to help mitigate risk and doing our very best to raise more funds for epilepsy research to help uncover the brilliance that will end epilepsy—forever!
Please watch this educational video on SUDEP as presented by Cassidy Megan, founder of Purple Day. For more information, please visit www.SUDEPaware.org or SUDEP Aware on Facebook.
Lisa
"Lisa was a busy student studying dentistry at the University of Toronto. She was bright, beautiful, and a joy to her family, friends and fiancé. She had her future planned, and she was extraordinarily happy. Lisa was very careful with her health. She always took her medication, avoided alcohol, and saw her neurologist regularly. Her nocturnal epilepsy seemed a minor inconvenience. SUDEP was never discussed with Lisa or her family. We all thought that Lisa was safe. Only later did we learn that Lisa was in a high-risk age group, and also at risk because her seizures only occurred during sleep."
Read Lisa's story on the SUDEP Aware website ...
Rick
Ironically, Rick had been looking into how lifestyle choices like diet and exercise can impact seizures. He did tests, started a new medication and worked hard to control his seizures—and it was making a difference. "That's one of the reasons Rick's death was so unexpected," said his fiancé, Martha. Another reason is that she and Rick's family had never heard of SUDEP. "If I had known ... maybe I wouldn't have been so completely and utterly blindsided," said Martha.
Read Rick's story on the SUDEP Aware website ...
Jordan
Jordan Fawcett described herself as "an enthusiastic, responsible and eager person who loves sports and taking on new challenges." After her diagnosis, she and her family spent a lot of time researching epilepsy on the Internet. They eventually found two lines of text in some hospital literature that mentioned SUDEP but it was classified as 'rare' and didn't seem to apply to Jordan.
Read Jordan's story on the SUDEP Aware website ...
Thomas
June 6, 2018 – It has been only one year since Thomas suddenly and unexpectedly left this earth. Today, June 6, is his first "angelversary." His mom, Mary-Anne, would have done a lot of things differently if she had known about SUDEP.
"On this 1st anniversary of his death we are still reeling. Life will never be the same. If we can help even one family avoid our heartbreak it would honour my son and we would be so thankful."
Read Thomas' story on the SUDEP Aware website ...
Evan
June 6, 2018 – Today we honour another angelversary, that of Evan Bayko who passed away on June 6, 2011. His mom, Corinne, not wanting her son to be forgotten, is honoured to have his story featured as part of our SUDEP theme this year. She says, "It brings tears to my eyes but joy to my heart."
Read Evan's story on the SUDEP Aware website ...
Hadyn
May 31, 2018 – Hadyn Kivinen had an absolute zest for life and an infectious smile. Sadly, three years ago, on May 31, 2015, Hadyn's life ended. In honour of Hadyn's "angelversary," his parents, Jennifer & Mark Kivinen, are sharing his story. Please read and share so more people can be SUDEP aware.
Read Hadyn's story on the SUDEP Aware website ...
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