Even in the most trying circumstances, Caitlin Ronan, a teenager in England, leveraged everything in her power to help others. After several years in the hospital, battling a progressive rare disease, Caitlin died after suffering a chest infection one year ago. She was 17.
Caitlin suffered from Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), a neurological disorder that inflames nerves, and destroys the myelin sheath responsible for nervous system communication. The rare disease causes sensory changes, difficulty walking and moving muscles, fatigue, and ultimately, respiratory problems. While the cause is still unknown, CIDP is thought to be an autoimmune disorder. To learn more about CIDP, click here.
Towards the end of her life, the disease stripped Caitlin of control over much of her body. She was confined to a hospital bed, communicating through an “Eyegaze” program. Although that may sound limiting, she used it to maintain independence and combat isolation. In fact, she had actually taken the initiative to fundraise for it herself. Once she reached that goal, she continued to fundraise, even as her condition deteriorated. She turned her attention to others who were suffering, and managed to contribute £34,000 (that $44,800 in the US) to the causes she cared about. She was able to provide Eyegaze devices to two other children– an 11-year-old and a 5-year-old. After Caitlin’s death, her set was donated.
Even towards the end of her life, which in many ways, challenging and painful, she was determined and driven to make her life count. Caitlin’s mother, Louise, tells Hereford Times that her family continues her work in her honor. They have received help from Smartbox, and have purchased three more Eyegaze sets for patients in need.
Caitlin lives on throughout the community, who has honored her in numerous ways. The high school she attended has created an award recognizing remarkable courage in her name. Graeae Theatre Company, an organization that supports actors with different abilities, raised funds in her honor through “Caitlin’s Stars.” Her friends planted a Japanese Cherry Blossom Tree to remember her.
Caitlin, a remarkable girl with a devastating condition, was not only able to advocate for her own independence, but to leave a lasting legacy that changed lives– without the ability to speak or get out of bed. Her story reminds us that even as the body is challenged, the passion of the person inside can shine through.