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.

I believe I can’t pick and choose what inspires me. I also believe that when inspiration strikes, it means there’s a mountain that needs some moving and I can help with that! I learned about Chelsea and the Chelsea Hutchison Foundation through Facebook. I was devastated to learn of another precious life taken by SUDEP. Almost immediately, and for reasons I don’t claim or pretend to understand, I could feel Chelsea in my world. Her goofy spirit is with me every day! It is hard to ignore a gift like that. Julie Hutchison and I have become good friends. I’m certain Chelsea had a plan for us.

I have no words to convey my feelings about a parent who loses a child and then makes the decision to work on a daily basis to protect others from a loss like theirs. I don’t believe that put in their position I would be capable of that effort. I know I wouldn’t be. I got to know this family and spent time at two of their events in Colorado. They truly are amazing. Their efforts are powerful and grass root in the truest sense. It’s hard work every single day. The world is not taking epilepsy seriously yet, and so many people with epilepsy don’t even know that a seizure can take a life.

I am bringing this foundation and their mission to as many people as possible in the Chicago area. My daughter Olivia (14) and my son Sam (11) are a big part of my effort! We’ve had a lot of family fun coordinating STOMP the last three years! The three of us are working with Julie and Doug to help keep people with epilepsy safe and make life (and breathing) a little easier. Seizure detection saves lives. Every time CHF supplies grants for service dogs or monitors that alert caregivers, they are potentially saving a life! I wish someone had done sooner what Julie and Doug are doing now and that Chelsea was still here. I wish that every day.  I am so proud to be a small part of this effort!

My name is Stacey Biggs. I graduated from Metropolitan State College of Denver in 2003 with a Bachelor of Science degree in Accounting. I married my husband a few months later in September 2003. I had big plans for us, but things changed quickly when we were blessed with beautiful healthy twins in June 2005. My daughter’s name is Joey and my son’s name is Tyler. After they finally came into this world, I realized my plans were no longer what I wanted. I no longer wanted to go back to work; I wanted to stay home and raise our children. We were able to cut back on things and do a lot of budgeting, so that I was able to stay at home with them. In May 2007, we purchased Colorado Heights Camping Resort in Monument, CO. I began working from home which is no easy task with two young toddlers in tow.

On Halloween in 2007, our lives changed forever again. 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, our life changed forever again. We saw an ad for an epilepsy walk in Clement Park 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 my husband 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, my husband had to rush Tyler to the ER as he was barely breathing.

I believe it was April 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, has now been a part of our family for almost four years. She is a huge blessing in so many ways for us. She does alert us when Tyler is going to have a really bad day.

It was my ultimate goal to raise enough money to pay the foundation back. Thankfully, I was able to plus some. Since then, I have wanted to pay it forward. 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. Since then, I have volunteered at numerous events and set up fundraisers. I am honored to be working with the Hutchison family and even more honored to be an ambassador of the organization.

My name is Shelly Pulliam. Our story started on July 3rd in 2013. My oldest daughter Halle, 8 years old at the time, woke me up in the early hours of that morning. I found her in bed having a tonic-clonic seizure. It was the scariest, most horrifying experience of my life. I crawled in bed with her, yelling for my husband to call 911. Blessed with living in a small town, the rescue unit came within minutes.

After tests in the ER that morning, a trip to Children’s Hospital in Omaha that week for an EEG, Halle was diagnosed with benign rolandic pediatric epilepsy. The first few months were very hard for all of us. Halle was scared and confused. Her dad and I would take shifts sleeping so that one of us would be awake to hear her. On Purple Day that March, I went to her school and talked to her class. She stood up with me at the end and finally told her peers she had epilepsy, she was no different than she was before, and that she needed her friends to not be afraid if and when she seized. I had never in my life been so proud of her! I posted on Facebook that night (sporting our Purple Day T-shirts) and later received a blessed phone call from my husband’s amazing cousin Terri Davis. She happened to be an advocate and part of the Colorado Epilepsy Foundation. She gave me the name and info to contact The Chelsea Hutchison Foundation. Halle was a SAMi alert grant recipient a few weeks later. That amazing device has forever changed our lives! We also found the support, education, and understanding within the community of the foundation that we needed!

After trying a few different meds to find the right one, and many seizures later, we are so blessed and fortunate that Halle has been 19 months seizure free!

Throughout our journey we realized that we needed to educate not only ourselves, but our community, family, and friends about epilepsy and SUDEP. We hoped that by educating people, we could help eliminate some of the “fear of the unknown” associated with seizures and epilepsy. Following the foundation’s Facebook page we learned about STOMP! After attending our first walk with our family, we hosted an unofficial walk this year, and I am thrilled to be hosting an official walk in ’16!! I have also been to Halle’s school educating the student body, teachers, and staff. I am so excited to have officially become an ambassador for the Chelsea Hutchison Foundation and have the opportunity to continue to pay it forward and to give to others the comfort and support we have been blessed to receive.

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.