The Chelsea Hutchison Foundation grants comfort and hope to those affected by epilepsy through providing monitoring resources, vital information, and a safe haven for conversation and community.
Our main goal is to raise awareness of SUDEP and to make a positive difference in the lives of individuals and families living with epilepsy.
We raise funds to provide education about SUDEP and to provide seizure response dog grants and movement monitors that help to protect against SUDEP. In addition, we grant wish trips to Epilepsy Awareness Educational Expo and Day at Disneyland each year.
We stay up-to-date on current trends in medical technology in order to be able to provide the most effective devices as they become available.
We respect the value and quality of life of every person living with epilepsy.
We are dedicated to providing opportunities that allow individuals and families greater independence, increased confidence, ability to enjoy social environments, and community understanding.
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.
Michelle C, Ohio - "Wonderful non-profit! Julie and Doug are great people. My son won a trip in 2018 and he experienced so many new things while we were there. We went to the epilepsy expo in Disneyland and also learned a great deal while we were there. I feel it is also fantastic that they honor those families, including their own, who have lost loved ones due to SUDEP, by extending their Disneyland/expo trip drawing to families in honor of their loved ones. The foundation also helps with monitors and service dogs as well for those with epilepsy, which I have no direct experience with but see many faces of those who have been helped."
Emily B./South Carolina - "Our family has been greatly blessed by the Chelsea Hutchison Foundation. After reading about Chelsea and how her memory continues to live through her parent's love for her and their advocacy for Epilepsy and SUDEP, I learned that CHF could possibly help protect our daughter through their assistance in providing our family with a seizure monitor. Julie made the process so simple and we are so grateful for the donations and fundraisers that make it possible for families like ours to rest easier at night. Our daughter has also been chosen to attend EADDL this November and we are so thankful for this amazing opportunity. The Chelsea Hutchison Foundation has been life-changing for my daughter and our family."
Sky L./Colorado - "I have been granted two different types of seizure monitors and it has changed my life. My mom no longer has to constantly check on me to make sure that I had a seizure and passed in my sleep due to SUDEP. Another watch monitor that I received allows me to stay home alone, which my family was never comfortable with. I am in high school so this was a struggle for me personally. CHF has allowed my family so much freedom and comfort. Not to mention that Julie is the sweetest and hardest working person I know. She cares for everyone. I love this foundation. I decided to raise awareness at my own high school about epilepsy and SUDEP during volleyball season and donated all the money raised to CHF because I know how much it will save/change a live. Plus, Julie drove two hours to support the game and my speech."
Gene N./Colorado - "This foundation has done so much for my family! We are fortunate enough to have gotten to go to Epilepsy Awareness Day at Disneyland through them, and they provided a grant for our beloved service dog Caballine. They have also provided us with a life changing sleep monitor to make sure our girl is safe at night. But aside from all that, they have created a great community of people that we just didn't have access to before running into them. I just can't say enough good things about this foundation!"
Kathryn L./Wyoming - "I am a SmartWatch monitor recipient and Chelsea's wish winner to epilepsy Awareness day at Disneyland... I can't say enough great things about this family and foundation.. I have not just gained some freedom with my monitor, but I have gained lifelong friendships; so much education about epilepsy and SUDEP. I have found a safe haven of friends to talk with about a subject that not a lot understand... at CHF Everyone understands... they are caring and compassionate... "