Jordan's Slide for SUDEP

Jordan's Slide for SUDEP

On November 2nd, 2010 we lost our precious 15 year old daughter, Jordan Lynn Fawcett, to SUDEP (Sudden Unexpected Death in Epilepsy) - totally unexpected and still unexplained. Jordan described herself as, "an enthusiastic, responsible and eager person who loves sports and taking on new challenges.” She brought incredible energy and enthusiasm to our very close and loving family of four. Now we are three and left with broken hearts and so many unanswered questions. 

Sadly, Jordan's story with epilepsy is very short. She suffered her first and only grand mal seizure while trying out for a rep basketball team. Then after some testing she was diagnosed with epilepsy and put on medication. After, she experienced about a dozen what we thought would be considered absence seizures, as we truly didn't have time to learn and research it all. After a medication change, Jordan then went six of the 12 months seizure free, or so we thought. You can read Jordan's story with epilepsy here.  

Statistics say that 1 in 100 people live with epilepsy. Yet very few know anything about SUDEP. Sadly most bereaved by SUDEP only find out about it once they have lost their loved one. SUDEP is not a disease or a condition - it is a cause of death. There is no known cause for SUDEP and yet it claims the life of 1 in 1000 people living with epilepsy. Given these statistics you may think SUDEP is rare; but this statistic increases to 1 in a 100 for those with poorly controlled seizures. Although they don't know why SUDEP happens, there are some measures that a person can take to lower their risk. But how can one do this, if they don't know about it. Hence our passion to bring more awareness to SUDEP - in hopes of making a difference for those LIVING with epilepsy today!

So we partnered with SUDEP Aware; a charitable organization that works towards:

• raising public and professional awarenness of SUDEP
• improving public and professional understanding of SUDEP
• supports SUDEP research
• and assists families bereaved by SUDEP.

We supported SUDEP Aware by organizing and hosting an awareness and fundraiser called Jordan's Slide for SUDEP in Jordan's memory. Although our objective was awareness, we also raised over $100,000 for SUDEP Aware to carry on their mission. We also donated much of these funds to SUDEP research as Jordan fell in the low risk category and yet was lost to SUDEP; so clearly there is much more to be learned!

We are proud of our accomplishments, but it can't stop here! Please help us in keeping Jordan's legacy of giving alive, by helping to bring more awareness to SUDEP and be a part of the solution.

We thank you for your kind support and for helping to prevent other families from going through a similar horrendous loss like we have in Jordan. Together we ARE “Make A Difference!”

Our sincere appreciation in loving memory of Jordan,

Deb, Dave & Andy Fawcett