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 Day and Expo 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?
Lorie M., This foundation was built on tears and an abundance of love. It's more than apparent. The love and compassion they show from the second you write them is instantaneous. Thank you so much for all you have done for our family. I hope to be a huge part of this amazing organization. I never expected what I received and I'm in awe. From the bottom of our hearts thank you for the huge piece of mind you have given us.
Alice B., FL - My experience with CHF started years ago. I turned to them as a resource for information about epilepsy and how it impacts education. They were an excellent resource, providing information on tools to help my son succeed academically. They have provided tools to help, as well as information and support in helping my son get his education. Recently, my family had the opportunity to participate in Epilepsy Awareness Day in Disney Land. What a life changing experience! We were surrounded by people who made us feel like a part of something. Everyone was warm, wonderful and very kind. We immediately formed friendships that I hope will last a lifetime as a result of that opportunity. I can only say that CHF is truly an organization devoted to helping those with epilepsy to live with dignity. They are there for their families, loved ones and caregivers as well.
Sarah R., This foundation does great things for families who need help and support. They did such amazing things for my family and I and especially my daughter. It helps us sleep at night knowing she's safe. Thank you to the foundation.
Carrie., My son was diagnosed with juvenile myoclonic epilepsy almost two years ago. Before his first seizure he was a sophomore in high school, on the varsity wrestling team, very outgoing, with dreams of becoming a chef. His neurologist said " no more wresting, and no more cooking". This news crushed him. He got depressed and lost interest in many things and felt he was all alone. He was soon placed on home'school because of the seizures.. I reached out to the Chelsea Hutchison Foundation for support. I applied for the trip to Disneyland for the Epilepsy Awareness Days. To our joy he was one of the chosen for the trip. While on the trip met so many kids with the same condition as him. He smiled for the first time, his depression was less and asked if he could try going back to school, because he now felt not alone. He went almost 6 months without a seizure. So I agreed he could go back to school. This foundation told me about the smart monitor watches and they gifted him with a watch. This gave me peace of mind knowing when and where he would be if he had a seizure. In January of 2018 he went back to school but, the stress of school caused him to have 9 seizures within a week, which caused temporary hearing loss from so many. He immediately went back to home-school. His smart watch notified me, his brother and grandfather of every seizure and we were able to respond quicker to him. I truly believe had we not had the support of Julie and the Foundation my son would still be in a state of depression and I would have no way to know when he has a seizure. The CHF is an amazing organization that helps thousands by their efforts. They bring so much awareness, education and hope to so many.
Wendy F., This foundation brings much needed awareness about SUDEP to families caring for loved ones with epilepsy. They also provide essential monitoring devices to assist families in caring for their loved one. There is no replacement for the peace of mind these life saving devices provide. Wonderful organization.
Jennifer O., This is such a positive, caring place. Providing parents such peace of mind. I was so touched to read Chelsea's story and see what they are doing for people. I will always be a part of this and encourage awareness. Really special people with big hearts!! Thank you for all you do.