Background Statement
Organization History: Julie Hutchison is President and Co-founder of the Chelsea Hutchison Foundation. Julie's mother had her first seizure at the age of about 59. Over the next 18 years, she experienced 2-3 seizures a year until her death in June of 2007 at the age of 77. It was obvious that she had experienced a seizure and had passed away.
Julie's beautiful daughter, Chelsea, had her first seizure at her 11th birthday party! The strobe light was believed to be the cause of the seizure. Over the next 5-1/2 years, Chelsea experienced 3-5 seizures a year and lived a very normal life. She was a straight-A student and very much loved by her community, and she was the love of her family's life.
After losing her mother, Julie made appointments with both her mother's and Chelsea's neurologists. Julie was concerned because she had always been told that a seizure would not harm Chelsea, nor was it dangerous other than the risk of hurting herself from a hard fall. She had also been told that she should never be left alone in a pool or bathtub because if she experienced a seizure, she could drown. At both meetings with the neurologists, Julie was told she had absolutely nothing to worry about-it was a fluke that her mother had passed after a seizure and her death was probably related to her heart. So, Julie and her family went along on their merry way...
In January 2009, Chelsea was going through a change in medications. Nothing she had taken in the past five years had given her complete seizure coverage, and she was going through the medicine dance to find the right one. She became somewhat unstable, and at that time was experiencing a tonic-clonic (grand mal) seizure almost weekly during these medication changes. Chelsea also experienced absence seizures, another form of epilepsy, which could best be described as blank stares. Chelsea's parents found that she would have fewer absence seizures in the morning if they were able to get her medication into her an hour or so before she was on her feet. On the morning of April 19, 2009, Chelsea's father headed to Chelsea's room to administer her morning dose and found her in bed not breathing. It was obvious she had passed away hours before, so there was no emergency service that would have made a difference at that time. Unless someone has lived this horrific nightmare, there are no words that can explain this pain and how their lives as they knew it ended that unforgettable morning.
After losing Chelsea, her family knew they needed to do something in her name to make a difference. The Chelsea Hutchison Foundation was created, and they began the mission of raising public SUDEP (sudden unexpected death in epilepsy) awareness as well as raising funds for seizure-response dog grants. In time, they began providing Emfit movement monitors to those who could not otherwise afford them. Had they known to be concerned, they would have, without a doubt, had every line of defense they could find in place for Chelsea in hopes of being alerted to a night-time seizure. They believe strongly that they might have been able to save her life. Chelsea's first night-time seizure was the one that took her life. The Chelsea Hutchison Foundation has heard story after story from families who do have these lines of defense in place who believe they have saved their loved-one's lives because they were alerted. Even if Chelsea's family had not been able to save her life, they could have at least been with their baby as she crossed over, and she would not have been alone.
These what-ifs have almost destroyed Julie and Doug Hutchison. Helping to educate reluctant neurologists is one of the biggest challenges in spreading SUDEP awareness. Doctors seem to believe that discussing SUDEP adds stress to an already stressful situation, so they avoid it. We believe knowledge is power! Both Chelsea and Julie's mother were low risk in every category. Parents who have children with other disorders and diseases understand the risk. Why should epilepsy be anything different? With the National news of the passing of Disney's actor Cameron Boyce to SUDEP, requests for assistance have dramatically increased.