Meet Our Family Advisory Council Members

Dena Chapman is a mother, advocate and lifelong believer in the power of the parent voice. She is the proud mom of two brilliant young adult sons, including her youngest, who has a rare neuromuscular condition. Dena’s caregiving journey began more than two decades ago. It has shaped not only her life but her life’s work.

With a bachelor’s degree in psychology from Loyola University and advanced studies in editing through the University of Chicago, Dena brings both professional and personal depth to her advocacy. Over the past 25 years, she has worked across grassroots and state systems to strengthen family engagement and champion the voices of parents in shaping policies and services. She has served as a Parent Liaison in Early Intervention, a master trainer in parent development and parent leadership development, and has been a key voice in the development of a new Early Childhood Education and Care system for Illinois. Her leadership has helped activate family councils statewide and build lasting change through authentic collaboration.

Dena is especially passionate about improving systems of care for children with disabilities and ensuring that the transition to adulthood is met with support, not barriers. She joined the Family Advisory Council (FAC) to be part of the critical work on behalf of medically complex children and families in Illinois. Dena believes the FAC is a space where real, meaningful change begins.

Dena describes her caregiving journey as life-changing and deeply spiritual. In a moment of fear and uncertainty, she found strength, clarity and a promise to give her son everything she had. Since then, she’s held onto the belief that “I have everything I need to care for my son. I am more than enough.” That reminder has carried her through the hardest days, growing her faith and love along the way.

Fun fact:

Dena is a classically trained ballerina and even built her own ballet studio at home. Just don’t ask her to perform, because she admittedly has serious stage fright!

Theresia Davis is a parent, advocate and community leader with a heart for service and a deep commitment to helping families navigate complex care systems. She is the proud adoptive parent of her son, Jacoby.

Jacoby is a joyful and resilient child with multiple disabilities. While the journey has had its challenges, Theresia calls it both difficult and a blessing. It has taught her the power of advocacy and the importance of showing up for others.

Professionally, Theresia works with a local outreach center that provides food, medication and essential resources to those in need. She is also a pastor and a member of the Family Advisory Council at St. Louis Children’s Hospital. Through her work and lived experience, Theresia has seen how overwhelming it can be for families, especially new parents of medically fragile children, to find the right information, support and guidance.

That’s what inspired her to join the FAC.“I was lost at first. I didn’t know what to do or where to go,” she shares. “I want to help other families so they don’t have to struggle like I did. If I can make someone’s load just a little bit lighter, that’s what I want to do.”

Theresia believes that being a caregiver means being a powerful voice, and often, the only voice for your child. She leads with compassion and purpose, always seeking ways to uplift other families and turn everyday challenges into opportunities for connection, understanding and meaningful change.

Fun fact:

Alongside her advocacy work, Theresia also serves as a pastor, offering encouragement and support to others through both faith and action

Mary Herschelman is a writer, publisher and devoted advocate who brings her heart and storytelling skills to the FAC. With a background in journalism and a career as the publisher of a community newspaper, Mary knows the power of words to raise awareness and build connections.

Her advocacy began through her journey as a parent to her late daughter, Grace, who lived with a rare disease. Together with her husband, Mary worked to bring attention to rare conditions, support access to in vitro fertilization (IVF) and champion accessibility. These tremendous efforts have made an impact both locally and across Illinois.

Mary was introduced to the Division of Specialized Care for Children (DSCC) after her daughter transitioned from Early Intervention. She has never forgotten the support her family received. Now, she serves on DSCC’s Family Advisory Council in Grace’s memory, offering her insight to help other families feel seen, supported and less alone.

She reminds fellow caregivers to celebrate the small milestones and hold onto moments of joy. “Special needs parenting has so many challenges,” she says, “but focusing on the good parts helped me stay positive for my family.”

Fun fact:

Mary is a huge “Harry Potter” fan and lives by one of her favorite quotes, “In a world where you can be anything, be kind.” She strives to embody that kindness every single day.

Christina Kiesewetter is a former medical assistant turned full-time stay-at-home mom and caregiver. Drawing from both clinical experience and personal caregiving, she brings a compassionate, grounded voice to the FAC.

Christina has served as an Easterseals Family Ambassador and is a member of the Parent Advisory Council for her local special education association. Her motivation for being a family leader and voice in all these spaces is deeply personal because her family didn’t learn about many of the available resources until later in their journey. Now, she’s determined to help other families connect to support and services sooner, so they never have to feel like they’re navigating this alone.

Christina describes caregiving as “the most difficult but joy-filled journey.” She reflects, “You don’t know how strong you are until you’re faced with the unthinkable. I try to live every day knowing that ‘I can do hard things’ for my son, and for myself. Caring for him has been the greatest honor of my life.”

Fun fact:

Christina dreams of one day owning cattle, proving that her heart belongs not only to her family but also to wide-open spaces.

Krystle Myers is a dedicated mother and advocate who brings both professional expertise and deep personal experience to the FAC. Before becoming a full-time caregiver to her daughter, who lives with a rare disease, Krystle worked as a program coordinator at JPMorgan and attended nursing school. Her medical background has helped her navigate the overwhelming world of complex care. However, even with that training, she’s experienced how hard it can be to get the right support in Illinois.

Krystle has turned those challenges into action. She’s served on the Illinois Rare Disease Commission and helped pass state legislation (Senate Bill 67) that amends the Newborn Metabolic Screening Act to include mandatory screening for metachromatic leukodystrophy (MLD). She also advocates nationally through the EveryLife Foundation and stays connected to the Make-A-Wish community through their walk and alumni team.

Krystle joined the FAC to help improve the road for other families like hers who deserve timely, compassionate and coordinated care without having to travel across the country to get it. She’s proud to use her voice to push for change and make Illinois a better place for medically fragile children.

Her advice to fellow caregivers is, “Take it minute by minute, then day by day. Every single day is a gift.”

Fun fact:

Krystle spent six months living in Guatemala and still calls it one of the most amazing experiences of her life.

Kassandra Santos is a proud medical mom, lifelong learner and passionate advocate. With a master’s degree in Higher Education and Student Affairs, she has worn many hats throughout her career, from student affairs and human resources to customer service and warehouse work. Each role has shaped her into the caregiver and advocate she is today, giving her the tools to navigate complex systems and support others with empathy and strength.

As a newer parent to a child with medical complexity, Kassandra’s caregiving journey is still unfolding. While navigating cultural dynamics and learning how to advocate for her daughter, she’s also found the courage to set healthy boundaries that keep her family grounded. Bilingual in English and Spanish, Kassandra works intentionally to ensure her family’s story is accessible to others in the Spanish-speaking community.

Kassandra was drawn to the FAC because she genuinely believes in the power of possibility. One quote that has guided her for years is, “She is a dreamer, a doer, a thinker. She sees possibility everywhere.” It’s more than just words; it’s the way Kassandra moves through the world.

That mindset of curiosity, action and optimism fuels her commitment to advocacy, especially for those whose voices too often go unheard. With a strong foundation in equity and inclusion, she continues to learn, grow and speak up, not just for her own family but for many others navigating similar journeys.

Fun fact:

Kassandra has a gift for connecting with people from all walks of life. She uses that gift to build bridges, spark conversations and uplift her community wherever she goes.

Aurea Shelton is a passionate advocate, nonprofit leader and devoted parent who brings both professional insight and lived experience to her work on the FAC. She holds a bachelor’s degree in Business Administration and currently serves as the Director of People and Culture at Salt and Light, where she fosters an inclusive, mission-driven workplace culture.

Aurea is a National Consumer Scholar through the Camden Coalition and a graduate of the Emerging Community Leader program through United Way. She also serves on the Pulmonary Rehabilitation Program Board at Ann and Robert H. Lurie Children’s Hospital of Chicago. Through these roles, she has built a reputation for being a thoughtful and persistent voice for families of children with complex medical needs.

She is especially proud of her work alongside DSCC families and staff to improve outcomes for children on the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent. Her motivation to serve on the FAC comes from a deep belief that children with the highest needs deserve to be heard, and that lasting change comes from walking the road together, one step at a time.

Aurea shares this encouragement for fellow caregivers: “This journey isn’t measured by outcomes, but by the steps we take every single day. Some days are long, some are short, some are tough…but keep going. One step at a time will get you there.”

Fun fact:

Aurea loves boxing! It’s one of her favorite ways to stay grounded and strong.

Esra Tasdelen is an academic, writer and mother of two living in the Chicagoland area. As the parent of a child with complex medical needs, she is deeply passionate about disability rights and inclusion. Esra draws from her family’s journey to raise awareness, foster empathy and build stronger support systems for others. 

She is currently writing a memoir that reflects on her caregiving journey, offering an honest, heartfelt exploration of the growth, challenges and transformation that come with parenting a medically complex child. She has also shared her story through personal essays for various advocacy organizations, where she hopes her words will help others feel less alone and more empowered.

Her motivation to join the FAC comes from a place of deep hope. “I want to help make life easier for families like mine, one step and one day at a time,” she says. Through her role on the council, Esra is honored to help shape policies and programs that support children with medical complexity across the state.

Esra describes caregiving as the most difficult and most meaningful journey of her life. “My son’s courage and resilience inspire me every day. He has opened my heart in ways I never could have imagined,” she said.

Fun fact:

Esra is a voracious reader, averaging 65–70 books a year—and always looking for her next great read.