The idea of Evie’s Warriors was started by Evie’s mom, Heather. While still pregnant with Evie, family and friends began calling themselves “Evie’s prayer warriors” and the name just kind of stuck. It became more and more difficult to keep all of “Evie’s Warriors” updated on her progress so a Facebook page was created. Through the Evie’s Warriors Facebook page Heather began meeting moms all over the country that had a similar story. It became evident that all had a few things in common 1) their stories 2) the need for emotional support from other people walking the same path and 3) financial help. It is then that Heather began establishing the non-profit organization to support these families. It is our mission to raise awareness and enhance the quality of life for children with spina bifida and their families through financial and emotional support.
Evie’s Warriors is blessed to have amazing Officers and a Board of Directors behind the scenes making things happen.
Heather is first and foremost, the mommy to Evie and, big brother, Gavin and wife of Joe. She is a 2008 graduate of Missouri State University where she studied Political Science and Communications. She is a paralegal at a National law firm in St. Louis and the President of Evie’s Warriors. Shortly after Evie’s diagnosis Heather found it difficult to find a safe place to find emotional support for the roller-coaster of emotions she was feeling and updated information on spina bifida. The medical community is developing so quickly with advancements such as fetal surgery, the use of stem cells and cutting edge therapy equipment yet a lot of that information is lost in the sea of the internet. It is Heather’s hope to stay on the front lines of medical advancements to be able to provide more current information and support to newly diagnosed families as well as a resource to families with older children seeking new treatment for their child. Heather would love to see Evie’s Warriors be able to financially help families seeking new treatments and help with the cost of caring for a child with spina bifida, while continuing to spread awareness through fun events and informational packets with resources and goodies to newly diagnosed families.
Lauren serves as the organization’s Secretary. Her extreme organizational and note taking skills are going to pay off! Lauren and Heather met in 2004 when they lived down the hall from one another freshman year of college. The two quickly became best friends and have continued their friendship over hundreds of miles and over 12 years! Lauren has been by Heather’s side through the entire journey with Evie from diagnosis to NICU stay to the ups and downs of daily life. Lauren has stepped up to the plate to make sure Evie’s family has everything they need for hospital stays and has even traveled to be with the family during Evie’s big surgery in 2014. Lauren has been a huge advocate for Evie and is constantly researching and learning more about spina bifida to better understand Evie’s challenges. Lauren is an avid runner who puts in tons of miles and dedicates her runs to Evie. She is also a mother to 2 beautiful girls and wife of an equally awesome husband!
Jenny has been a part of Evie’s life since before she ever met the outside world. Jenny is a pre-school teacher and that is where she first met Heather and Joe. There was an immediate connection between Jenny and Heather and a friendship ensued. Jenny was always very plugged in to Evie’s pre-natal appointments and her progress and has learned so much over the past few years about spina bifida. Jenny is now Evie’s favorite teacher and the feeling is mutual – the 2 of them truly have a special connection. Jenny’s role is so important to the mission of Evie’s Warriors – helping to reach the community and spread awareness through contact with local businesses and helping to plan our 3 annual events.
Mason and Joe have been friends since 1996 when they met in 4th grade. Mason has been a constant in Joe’s life through some tough times over the years. Distance has not taken a toll on their friendship. Mason is a content strategist and copywriter by day and is looking forward to contributing his skills to Evie’s Warriors. Mason has a very level-headed approach to life and can keep us on track and focused on our mission. Whether that’s writing or editing newsletters or event flyers his input is always valuable. His experience with content marketing and communication will be a vital part of ensuring Evie’s Warriors makes a difference in the spina bifida community for years to come.
Joe is Evie and Gavin’s dad and husband to Heather. He is a 2008 graduate of Missouri State University where he studied Broadcast Journalism and Spanish. Joe is the morning supervisor for a local TV station in St. Louis. He has been Heather’s rock since first hearing the words “spina bifida” on December 31, 2012. He witnessed and experienced first-hand the emotional roller coaster of a newly diagnosed child and the difficult task of finding other families going through the same thing. Joe quickly became Heather’s research partner and learned all of the medical advances being made in treating people with spina bifida. Joe is devoted to providing emotional support to other families and specifically other fathers of a newly diagnosed child. Joe has always been “the money man” of the family so it is with confidence we appoint him as Evie’s Warriors’ Treasurer!
You can say that Kaylie was placed in the lives of Evie’s family completely randomly but they say it was all God’s plan. Kaylie was matched with Evie and Gavin as their “Sunshine Buddy” through another non-profit organization with the mission of providing boxes of sunshine to sick and disabled children. Kaylie and Heather quickly connected and began their friendship. A NICU nurse by day and mommy to 2 beautiful children as well as a wife, Kaylie also has her hands full with complex medical issues of one of her children. At times when you feel no one could possibly understand what you are feeling you can count on Kaylie to know exactly what to say. Kaylie truly understands medically complicated children and will serve as a vital role on our Board of Directors.
Matt is Jenny’s husband, and although he isn’t involved in Evie’s day-to-day journey, that doesn’t stop him from being fully invested in the well-being of Evie and her family. He is always there when he’s needed and that includes event planning sessions, volunteering at events, identifying resources and providing emotional support. He has said numerous times “whatever Evie needs, I want to anything I can to help her get that.” His kind heart makes him a great fit for our board and his connection to Evie’s mission will be a driving force to bettering lives of children with spina bifida our organization will be blessed enough to help out.