Our precious Jordan, age 15, lived a short but very fulfilling life. In her resume, she describes herself as, 'an enthusiastic, responsible and eager person who loves sports and taking on new challenges.' She was a leader, mentor, friend, team player and was driven by her values and goals. Her positive approach to life was contagious and made people want to be with her. She was genuine, honest and open in all she did. She was strong and independent and made her own choices, even if they weren’t popular. But most of all, Jordan was BRAVE!
Jordan suffered her first and only tonic-clonic seizure while trying out for a rep basketball team. One month later she was diagnosed with epilepsy, but was told this could be controlled with medication. The medication left Jordan feeling lethargic, slow, clumsy and in an overall depressive sort of state. Not the girl we were certainly used to. However, she continued on whilst experiencing almost weekly absence seizures, all of which were while playing sports.
Almost four months later, Jordan had her first neurologist appointment. Her medication was changed, due to the side effects, with the promise that the 'old her' would soon return. This did happen, gradually, over the following 10 weeks.
Jordan accepted her diagnosis with positivity. She never let it get her down, and she talked about it with everyone. She continued to play sports even through the tough times of new medications and seizures. She would say to the doctor, 'It’s just a seizure, I’ll get over it.'
We, and Jordan, spent a lot of time researching epilepsy on the Internet and eventually learned of SUDEP from two lines of text in some hospital literature. It was classified as 'rare' and didn’t seem to apply to Jordan.
Then the horrific day of November 2, 2010, only 12 months after her first seizure, we found Jordan face down in her bed, victim to SUDEP! One tonic-clonic seizure, a dozen absence seizures, and 6 months seizure-free, our precious daughter was stolen from us and our lives changed forever! We are left with the 'whys and how' and many unanswered questions.
Now we fight for more awareness as only through more awareness will the money for research come to answer all these questions, and hopefully save another family from the devastation ours must now endure.
Deb and Dave Fawcett
Global Conversation 2011