Ruby Makes a Difference with the Teen Leadership Council

Having a chronic disease, with frequent hospital visits, is always challenging. Particularly for teenagers who can feel isolated from their peers during their illness. For Ruby, it was no different. At the age of 16, she came to Orlando Health Arnold Palmer Hospital for Children with a diagnosis of gastroparesis and severe dysmotility of the GI tract. In other words, her digestive system didn’t properly move food from the stomach to the small intestine.

“During my medical journey, the treatments for my illness always seemed as if they were failing,” Ruby said. For two and a half years, she was completely dependent on nutrition administered through an IV. Her stomach contents had to be continuously drained, and she wasn’t able to eat or drink anything during that time, she said.

“A specific treatment known as hypnotherapy was suggested and proved to be effective,” Ruby said. As of August 2018, all tubes and lines were removed and the IV nutrition ended. “I am now recovered and eating and drinking normally, thanks to my amazing doctors and hypnotherapy,” she said.

While at Orlando Health Arnold Palmer, Ruby learned about the Teen Leadership Council (TLC)—an organization for former or current patients, or a sibling of a current patient, with the mission to improve the care of adolescents and young adults. The group self-advocates and collaborates with patients, siblings and staff to provide state-of-the-art, family-centered healthcare.

Ruby was drawn to the idea of using the perspectives of members to improve the experiences of children, young adults and families. “Having first-hand experience as a patient at Orlando Health Arnold Palmer as a young adult has allowed me to truly process and register what it’s really like to be admitted in the hospital. Becoming a member has allowed me to use my experiences for a greater purpose,” she said.    

The relationships Ruby established through TLC have been a lifeline. While family and good friends supported Ruby through her illness, not all of her friends or acquaintances understood the nature of a chronic condition. At times, Ruby said, no one wanted to be friends with the “sick girl.” But with strength and resilience, Ruby focused her attention on places her energy and participation were appreciated, like with TLC.

“One of my favorite things about the TLC is that members have the ability to take part in multiple community volunteer opportunities,” Ruby said. “Being connected to the community in such a positive way has really allowed me to experience a sense of inclusion after being excluded from many things because of my chronic illness.”

While she was sick, TLC gave Ruby the opportunity to establish relationships with people going through similar situations, she said. Now she wants to pass that opportunity on and has taken a leadership role as secretary of TLC.  As a member of the council, she attends quarterly onsite meetings and participates in council projects, including special event planning, serving as a media ambassador, collaborating on corporate initiatives with hospital administrators, and taking part in leadership development opportunities.

Although Ruby has recovered and works hard to stay healthy, her illness has left an indelible mark—one that motivates her to use her experiences to help others. She plans to continue college, then attend medical school, with the ultimate goal of becoming a pediatric gastroenterologist.

Even after years of being ill, Ruby said she appreciates the help she’s had along the way. “Thank you to the TLC for establishing such an amazing mission,” she says. “Thank you for the endless opportunities, and thank you for making my experience as a patient mean something more than just being a patient.

“All in all, thank you to Arnold Palmer Hospital for Children for caring for the many patients and families in the way that you do. And thank you for making me feel comfortable throughout my entire medical journey!”