By Kimberly Spivack-Roelike, CNP, Family Medicine and Walk-In Clinic

My Sister, The Patient: Kari

Growing up with my sister Kari, who had Down syndrome, was a transformative experience for our family. Kari was diagnosed with trisomy 21 at birth or Down syndrome, and like many children with Down syndrome, she faced both physical and cognitive challenges. She had the typical features associated with Down syndrome, including a flat nasal bridge, low muscle tone, and delayed developmental milestones. However, Kari was always full of joy, love, and energy, with a personality that brightened any room she entered.

From an early age, it was clear to me that Kari was much more than her diagnosis. Yes, she had medical challenges, including a heart condition that required surgery when she was a toddler and frequent visits to the hospital for pneumonia. But she also had an incredible sense of humor, a deep empathy for others, and a passion for life that inspired me every single day. Watching her fight through the health obstacles, especially as a child, taught me the true meaning of resilience.

As Kari grew older, it became apparent that many people still saw her through the lens of her disability rather than her potential. Whether it was school or social situations, there were always those who underestimated her abilities. I couldn’t help but feel compelled to advocate for her, to show the world what she could achieve if given the right opportunities and support.

In 2017, Kari had a 49-day hospital stay for acute respiratory distress syndrome (ARDS). During this time, my family and I met many healthcare professionals who didn’t understand how to care for someone with a disability. During that time, she faced numerous obstacles, including situations where some of the staff lacked the understanding and knowledge about Down syndrome that would have helped in her care. It was a difficult period, but it also allowed me to advocate for her needs and educate those involved in her care. Through persistence, we saw improvements; ultimately, my sister’s strength and resilience shone through.

I began speaking out at work meetings, healthcare conferences, and seminars advocating Kari’s inclusion and understanding, but most of all, all people with disabilities. I became involved with organizations dedicated to Down syndrome awareness, and I made it my mission to educate people about the importance of seeing individuals with Down syndrome as people first—not as their diagnosis. She had many more hospital visits where It was noticed that staff were taking in their new education.

Through this advocacy work, I realized that not only was I fighting for Kari, but I was also standing up for the entire community of individuals with Down syndrome and other individuals who also need advocacy, such as ADHD, autism, and physical barriers like blindness or deafness. Every step of the way, Kari inspired me to push for better healthcare, social integration, and equal opportunities for everyone. And through my efforts, I saw firsthand the power of inclusion—how much the world could change when people looked past the disability and recognized the potential.

In the summer of 2023, Kari passed away from pneumonia. Four months shy of my wedding for which she was to be my maid-of-honor, even though she was physically gone, her presence was felt when we joined hands at the alter and looked up at as an eagle flew overhead.

Now, as I continue to advocate for people with Down syndrome, World Down Syndrome Day holds special meaning for me. It’s not just about raising awareness, though that’s incredibly important—it’s about celebrating the uniqueness and value of every individual, just as I’ve always seen in my sister Kari. She may have had Down syndrome, but she was so much more than that. She was a sister, a friend, and an incredible person who taught me about love, acceptance, and the importance of advocating for those who might not have a voice of their own.

For More Information on Down Syndrome

Read my previous post: World Down Syndrome Day: Advocacy, Awareness, and a Personal Perspective.