I am married and have three children Mikaela, Branson, and Patrick. My youngest son, Patrick, spent several months in the NICU after birth. He wasn’t expected to survive but he lived until the age of 13. He was diagnosed at six months of age as having a rare genetic disorder, T8M. Before being a Family Partner, I was with University of Missouri Kansas City as a Parent, with Sharing Our Strengths. I have been a Family Partner since 2014. I have served on the Missouri State Rehabilitation Advisory Council for the Blind and many other agencies that support families with complex medical needs. I enjoy being a Family Partner; my passion is helping other families avoid the struggles I experienced.

I have been married to Greg Pursley for 19 years. Together, we have two amazing children Evee-Kay (18) and Izaac (15). 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 10th 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 for the Bureau of Special Health Care Needs since November 2022.  I’ve been married to Mike for 22 years. We have two daughters, Kaylyn (21) and Allie (15). 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, hyperoxaluria, blood clots, and dysautonomia. She has unspecified behavioral disorders and has always gotten frequent pneumonia. 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 and she was able to graduate from high school in 2023. 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 who 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 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, as well as providing support and resources.