I have three children—two boys and a girl. My sons are 9 and 11, and my daughter is 4. I have worked in licensed child care for 25 years. I currently have a large family in home child care. Working with children is one of my passions.

On December 25, 2013, my older son comes into my room right before 7:00 in the morning. I am thinking he is coming to tell me Santa came and it is time to get up. Instead he says, “Something is wrong with River. Come now.” I jump out of bed and run into the room to find River having a grand mal seizure! River had a seizure about a year and a half prior to that in his sleep early in the morning. I just happened to walk by his room and caught it. Actually, I was not sure at the time if he was having a nightmare or seizure. After the first one, doctors said some kids just have one, so they did nothing else. Christmas morning in 2013 was the second that we happened to catch. My mind went crazy. How many did I miss? I did not sleep for a month because I didn’t want to miss it if he had another one. A friend told me about the Emfit monitor, and when I investigated it, I found out that insurance does not cover it. Luckily, the Chelsea Hutchison Foundation helped me get one. This is how I became part of CHF.

Becoming part of CHF has been such a blessing. I love being able to network with others that know what you are going through and understand why you are so worried. I also love helping CHF get the word out about epilepsy awareness and SUDEP. I have been to doctors that don’t think monitors are necessary and who don’t tell you about SUDEP.

I worked my first fundraiser for CHF in September 2014. After that, raising epilepsy awareness became a passion for me and so did raising money for CHF. They put my passion to work helping other families. In September 2015, I volunteered at the first annual STOMP California and it was AMAZING! I also met Julie Hutchison in person and, wow, that was better than meeting a celebrity to me. (To me she is a celebrity.) I live in a very small community where we don’t have state-of-the-art medical facilities. We must travel six hours to see my son’s neurologist.

I love that I can spread the word and awareness here and help families get the monitors they need and let them know that such a device even exists. I have talked with other moms in the area that had no idea these monitors are available. Some of these moms just need emotional support. I have been that mom who found out her child has epilepsy and the doctors don’t tell you much and you desperately want to talk to someone that understands what you are feeling.

I am very grateful that I get to be part of Julie’s team. She is an amazing woman!

Toni (Markow) New contributes to CHF by blending her years of experience in business administration with her life-long passion for photography. Understanding the Hutchison’s passionate desire to bring awareness, comfort, and community to those families living with epilepsy, she has photographed numerous CHF events including: Colorado’s STOMP, Galas, Canine for Comedy events, as well as EADDL (Epilepsy Awareness Day at Disneyland). Her hope is that her pictures will capture the amazing essence, fortitude, and strength of the people living with this heartless disease.

We are Jeff and Elizabeth Hansen and this is our family (Joseph, Jordyn, Jeff, Elizabeth, Erin, Nicholas, Nathan)! Our story with the Chelsea Hutchison Foundation began when we lost our Joseph to SUDEP on April 30, 2019. He had been diagnosed in very early 2017 after suffering a grand mal seizure during his sleep. We quickly learned to navigate the world of Children’s
Hospital, neurologists, administering emergency medicine, and most importantly, working with our Joseph through his diagnosis. The one piece we didn’t learn was tragically, SUDEP.

September of 2019, a family member found STOMP and we showed up in full force as a family to honor our Joseph and Support CHF. It wasn’t long after that, that I, Elizabeth started volunteering at bingo and my husband, Jeff, started supporting by making very steady donations through playing bingo! I quickly realized that Jeff was better suited to volunteer at bingo (he didn’t win much)!

We cherish our time with CHF and the space that it affords us to be understood in our loss and supported through it. We appreciate the love and energy that CHF extends to those within the epilepsy community and the work that is done to ensure that SUDEP is discussed to prevent any further loss of our loved ones. To say that we could not travel this path without CHF is a complete understatement and we will work to always honor Chelsea and our Joseph. We will educate about epilepsy and SUDEP as often as we can and CHF gives us the capacity to do so.

We are honored to be a part of such a wonderfully beautiful purpose!

My name is Stacey Biggs. I have 18-year-old twins, my daughter Joey and my son Tyler. They are my pride and joy and are truly my heroes.

On Halloween 2007, our lives changed. Joey and Tyler were just a little over two years old. Tyler had his first tonic-clonic seizure. Things progressed for the worse over the next few years. We saw our healthy boy disappear to the seizures in front of our eyes. His official diagnosis is Doose syndrome, a rare and catastrophic form of epilepsy that is intractable and medication resistant. After failing many meds (17 to be exact), the keto diet, and the VNS, we were at a loss.

In 2011, we saw an ad for an epilepsy walk in Littleton CO for the Chelsea Hutchison Foundation. Didn’t know anything about it but we were all about supporting any and all epilepsy awareness. We went to the walk and learned so much. We learned the fact that you can die from a seizure even though the doctors kept telling me no. And, about seizure-response dogs, we didn’t even know there was such a thing until then. My husband and I grabbed some info for future use.

In February 2012, the Hutchisons touched my family yet again. I was out of town at a funeral and the kids Dad was at home with Tyler and our daughter. Tyler was super sick at that time. Richard had seen a news story that was covering the Hutchison family and it made Richard bring Tyler to our bed. If he hadn’t seen that story, Tyler would not be with us today. That night, Richard had to rush Tyler to the ER as he was barely breathing.

I believe it was April 2012 or so when we decided to fundraise and start our process getting a service dog for Tyler. The Chelsea Hutchison Foundation was kind enough to give us a grant to cover some of the costs. Penny, our beautiful goldendoodle, became part of our family and was such a blessing to us. She protected Tyler and was his best friend for 11 years. We just lost her August 2020.

July 2018, another life changing event happened. This time, my daughter Joey, had her first seizure. A tonic clonic. I can honestly say, it is NEVER easy watching your child have a seizure. Even though we were very familiar with epilepsy and all that goes with it, it still has rocked our world. She has been diagnosed with juvenile myoclonic epilepsy and to this day, we continue to play the medicine game hoping to get control.

 The Chelsea Hutchison foundation has helped both my kids with multiple grants;  Tyler’s service dog, Sami monitor, trip to Epilepsy Awareness day at Disneyland and Joey is a recent recipient for a smartwatch with fall detection.

I have made it my goal to pay it forward, help others who are just starting on their epilepsy journey. What not better way than with a foundation that is all about raising awareness for epilepsy and helping families who deal with epilepsy on a daily basis. You will find Joey and I always volunteering at the walk in CO. I don’t get to volunteer nearly as much as I like, but I’m always available to talk, to listen, whatever you need on your epilepsy journey. Getting involved with the Chelsea Hutchison Foundation has been my greatest gift.  I can’t express how thankful I am for this foundation. I am honored to be working with the Hutchison family and even more honored to be an ambassador of the organization.

Ty and Jennifer Rudisaile serve as Ambassadors from Colorado, and have a son with Epilepsy. They have a background in Sales and Mortgage Banking, so have utilized that to help gather donations, spread awareness, and help others in the CHF Community. Jennifer says, “if you know me, you know about the Chelsea Hutchison Foundation!”

I love being an ambassador to the Chelsea Hutchison foundation. The day Julie asked me if I would be an ambassador was one of the most amazing, special days in my life. I plan on continuing to help with the organization of all fundraising events where and however I can… in whatever capacity I can, or Julie and Doug need me; I will do what needs to be done.

This foundation and family have given me love, friendship, confidence, and freedom with the life saving monitor. I want to continue to give back to this family and foundation by helping out, having my own fundraisers whenever I can and donate what I can when I can to this amazing foundation.

Thank you for this amazing opportunity.

My name is Karen Wagner, and this is my daughter Alexis Cardinal.

Alexis was diagnosed with Epilepsy in 2012 at 4 years old. She had Tonic Clonic and Absence seizures. In her younger years, she would have only 1-2 tonic clonic seizures a year. She was seizure free from 2016 until 2018.

In May of 2018 she had a seizure at the Taylor Swift concert. While we didn’t get to enjoy the concert, she did get to meet Taylor Swift which was a high light of her life. We were introduced to the Chelsea Hutchison Foundation in 2018 from one of Chelseas friends Jordyn. CHF was having its yearly Epilepsy Awareness Day at Elitches park, so we decided to go. There I met Julie and Doug and was introduced to the Foundation, but more importantly was made aware of SUDEP (Sudden Unexpected Death in Epilepsy) and the potential need for the Sami Camera monitor. I had never heard of SUDEP and had no idea that Alexis could die from Epilepsy.

In September of 2018 we went to the annual neurology appointment where I asked about SUDEP and was told “not to worry about it, as it was rare” and I was “wasting my money” buying a Sami Camera. I still bought the Sami Camera, as Alexis was having Tonic Clonic seizures every 2-4 weeks.

The Sami Camera captured so many of Alexis seizures. When we were transferred to an Epileptologist in February of 2021, she looked at all the videos the other doctor refused to look at. She saw things in those videos that led her to believe we could find a solution to Alexis Epilepsy.  u unfortunately, we never got the chance as Alexis passed away from SUDEP on December 16, 2022 at the age of 15.

I’m very thankful for CHF and the guidance provided with Alexis’s seizures and I’m very thankful for CHF for being there when Alexis passed away. I’m thankful for the Hutchison family and the awareness they bring to Epilepsy and SUDEP. While losing my daughter has been the hardest thing I will ever go through, I’m thankful for the support from the CHF Family.

You can always find me at the CHF events. I’m thankful and honored to be able to help spread Epilepsy and SUDEP awareness and to be a part of this great organization.