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.
My 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 6/2007 at the age of 77. It was obvious that she had experienced a seizure and had passed away.
My beautiful daughter, Chelsea, had her first seizure at her 11th birthday party! We believe the strobe light caused 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 was the love of her family's life.
After losing my Mother, I made appointments with both my mother's and Chelsea's neurologists. I was concerned because I was always told a seizure would not harm Chelsea, nor was it dangerous except that she could hurt herself from a hard fall. We were also told she should be never be left alone in a pool or bathtub because if she experienced a seizure, she could drown. At both meetings with the neurologists, we were told we had absolutely nothing to worry about - that it was a fluke that my Mother had passed after a seizure and it was probably related to her heart. So, we went on along our merry way...
In January, 2009, Chelsea was going through a change in medications. Nothing she had taken in the past 5 years had given her complete coverage and we were doing a 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, which can best be described as blank stares. My husband and I found that she would have fewer absence seizures in the morning if we 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, my husband had gone down to give Chelsea her morning dose when he found she was not breathing. It was obvious she had passed 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 I have that can explain this pain and how our lives as we knew it ended that morning.
After losing Chelsea, we knew we needed to do something in her name to make a difference. Chelsea Hutchison Foundation was started and we began raising public SUDEP awareness and funds for seizure-response dog grants. In time, we began providing Emfit movement monitors to those who could not otherwise afford them. Had we known to be concerned, we would have without a doubt had every line of defense we could find in place, in hopes of being alerted to a night-time seizure. We believe strongly that we might have been able to save her life. Chelsea's first night-time seizure was the one that took her life. We have received story after story from families who do have these lines of defense in place who believe they have saved their loved-ones lives because they were alerted. Even if we had not been able to save her life, we could have at least been with our baby as she crossed over and she would not have been alone.
These what-ifs have almost destroyed us. Helping to educate reluctant neurologists is one of the biggest challenges to spreading SUDEP awareness. They believe discussing SUDEP adds stress to an already stressful situation. We believe knowledge is power! Chelsea and my 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?
Julie O., At the time, my 18 month old son had started having seizures with no explanation. They were occurring multiple times throughout the night and it was terrifying and impossible to sleep at night. Someone from the community mentioned the Chelsea Hutchison Foundation and possibly getting a monitor for his bed. After sending in information - it wasn't long before we received the Emfit monitor for him. It has alerted us numerous times of a seizure occurring and we couldn't be more grateful. He is now 2.5 and the monitor has been such a great relief for night time.
Lindsay A., How do you start to explain the amazing experience this non-profit provides? I love the fact that this is a small but passion driven foundation. Every bit of the founders, board and volunteers goes into this work. Not one person takes a salary, every minute, every dollar goes to helping those in need. The community that this group creates is life changing. I do not have a family member that has epilepsy but the education I have received is astounding and knowing each minute worked and each dollar donated is literally going to save a life is priceless! The Founder is truly an inspiration!
Yvette M., My son has been given the gift of independence and as parents, we have been given the gift of peace of mind from the Chelsea Hutchinson Foundation.
Ashley R., Our lives were changed because of you. I get to sleep at night now, because you thought my daughter was worth it.
Jillian T., The Chelsea Hutchison Foundation is an amazing group of people. I am 34 years old and have had uncontrolled epilepsy for the past 14 years. I have been on many many different medications and 2 VNS surgeries. I have been on the ketogenic diet but still have many seizures each day. I finally agreed to get a seizure response dog but was unable to afford the enormous price tag. That's where CHF stepped in to help. I have now had Brody and not only is he responding but alerting as well. I could not ask for more. When I was at my lowest they stepped in and offered help. Thank you a million times over.
Christina S. - CHF is wonderful! As a single mom with a 7 year old daughter that has been battling seizures since birth, the seizure movement monitor is priceless to my daughter's safety and independence. Thank you CHF! What you do is amazing!
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.
Chandelle O. - After finding out about CHF and receiving a life saving monitor for my son I realized how amazing CHF is. They provide piece of mind and support for families in need. They raise awareness of epilepsy and SUDEP. I have started helping them raise awareness and realize how many people just don't understand epilepsy and how many people do not know about these life saving monitors. Thank you for for all you do, you are amazing behind words.
Denise M. - CHF has helped so many families to achieve a greater peace in the midst of the greatest chaos and feel a sense of belonging when stigma is at the highest. We have greatly benefited from being a part of the CHF family. CHF is the best non-profit I have ever worked with. Both my Epilepsy Warrior Boys have received a SAMi monitor, this has been life changing for our family!