I am a mom of three who has walked in your shoes. My youngest son was diagnosed with a rare genetic disorder, Trisomy 8 Mosaicism, and at the time, he was one of only 250 known cases. He faced the most severe challenges of all the known cases. Having struggled to find resources and support as a parent/caregiver of a child with complex medical needs, I knew that I didn’t want to see another family struggle. I joined Family Partnership in 2014. Before being a Family Partner, I worked 10 years with Sharing Our Strengths, at the University of Missouri Kansas City (UMKC).  I like to think of myself as “an outside-the-box thinker when it comes to problem-solving”.

In my free time, I volunteer as a Mental Health First Responder for the local police and fire departments. As a member of the local Emergency Operations team, I am known as an expert in helping individuals with special needs during a disaster. In addition, I do homeless outreach, and volunteer for several non-profits in the St. Louis area. When I have free time, I like to travel to visit my daughter in Texas and son in St. Louis. 

I have been married to Greg Pursley for 19 years. Together, we have two amazing children Evee-Kay (19) and Izaac (16). The day Izaac was born, he was diagnosed with Achondroplasia, a form of Dwarfism. At first, we were adjusting to physical and stature differences, but at three months old he started requiring oxygen, a pulse ox, and an apnea monitor full time. The challenges we faced over the next few years were unimaginable. At seven months old, Izaac got pneumonia and had to get a trach, and he became full-time vent dependent. Our family had to work together seamlessly with the help of medical professionals, equipment suppliers, and various state agencies to name a few. All of this is being done while trying to keep a marriage healthy and a daughter from feeling neglected. We have all learned a tremendous amount about determination through our faith. By working with each other as a team, we have made amazing progress and Izaac is in 11th grade with an Individualized Educational Plan.

I am a passionate special needs mom with a wealth of experience in the human services field. My journey as a parent to children with special health care needs is my driving force to advocate for and support individuals with unique abilities. With years of hands-on experience, I have developed a deep understanding of the challenges faced by individuals with special health care needs and their families.

My commitment to making a difference led me to pursue a career in the field of special health care needs. I have worked tirelessly with families in both the school and home setting in my roles as a teacher and parent educator to provide guidance, resources, and support to those in need. Through my work, I have witnessed the life-changing impact of supporting and empowering families with compassion and empathy.

As a special needs mom, I bring a unique perspective and unwavering dedication to my work. My husband and I are lifelong Missouri residents and parents to four children ages toddler-teen. I have parented children through birth, foster care, and adoption, with a multitude of needs and diagnoses. I am driven by a desire to create a more inclusive society where every individual is valued and given the opportunity to thrive.

I have been the Family Partner for the Southwest Region since November 2022.  My husband, Mike, and I have been married for 22 years. We have two daughters, Kaylyn (22) and Allie (16). Kaylyn was born 11 weeks prematurely and spent the first three months of her life in the NICU and PICU. At three months old, she had surgery to put in a tracheostomy tube and a feeding tube. In the years following, she was diagnosed with hydrocephalus, epilepsy, cerebral palsy, scoliosis, ulcerative colitis, sensory processing disorder, blood clots and dysautonomia. She has unspecified behavioral disorders and has always gotten pneumonia frequently. By the time she had her second birthday, she had already been admitted to the hospital 16 times. It has always been important to us for her to have the best quality of life possible. She was able to graduate from high school in 2023 and now attends a day program two days a week, where she is thriving. We juggle caring for her while keeping up with a busy teenager.

I joined Family Partnership in September 2022. I work with families statewide that have children that have been identified as deaf or hard of hearing. My husband and I have two sons. Brennan is hard of hearing and Colin is deaf. They both have Enlarged Vestibular Aqueduct Syndrome (EVA) and Attention -Deficit Hyperactivity Disorder (ADHD). Colin also has Mondini, a malformation of the cochlea. After Colin was born, I was fortunate to be able to stay home full-time with our sons so I could focus on them, their therapies, and all their medical appointments. Prior to staying home with our sons, I was the Associate Director of the Disability Resource Center and Access Technology Center at Missouri State University, where I oversaw all of the Assistive Technology and alternative formatting of textbooks. In addition to being a Family Partner, I also continue to do contract work as an Assistive Technology Instructor and Accessibility Consultant. I enjoy sharing all I have learned from our sons with other families; and providing support and resources.

I am proud to be a Family Partner for the Deaf / Hard of Hearing with Family Partnership.  Before joining the team, I spent 26 years as a paramedic in Missouri- serving the community and advocating for resources. My wife, Stephanie, a firefighter, and I are raising 11-year-old twins. Our daughter, Fiona is an amazing girl and has always given her time to help support her brother.  She wants to be a “gothic lit writer,” and we are sure she will change the world with her open heart.  Kian, our son, was born deaf, though his condition wasn’t diagnosed until he was five years old.  He is bilaterally aided and uses a combination of spoken language, visual language, and some ASL. He uses hearing aids now, though he has expressed that he wants to abstain from using them when he grows up. Currently, he identifies as Hard of Hearing. We were vigilant in seeking resources such as Parents as Teachers, the public school system, and doctors, yet never found our way to any of the early intervention programs.  Instead, we had to build our resources based on the needs of our family. Daily communication can be a challenge, and we’ve faced various behavior struggles. We have had scary moments that required us to focus on mental health. He has experienced trauma due to language deprivation. Despite these obstacles, he cares about living things with a heavy heart and is impressively intelligent, prideful, logical, and wise. In preschool, he wanted to grow up to be one of Santa’s elves; today, he wants to be a Navy Seal. We proudly say, “you can be whatever you want – but along the way, you may need to change the world to make it possible.” Though our journey, my goal is to help other families find guidance and support, so they don’t have to wander through similar struggles alone.

Please contact your Family Partner if you have any questions or concerns. Click the thumbnail to view the map and contact information.