It has taught me to take away my fear and face things with a smile

Zulema Hernández, a nurse from Villamuriel de Cerrato in Castilla y León, has been caring for Karim, a child from Palencia suffering from epidermolysis bullosa, commonly known as piel de mariposa (butterfly skin), since he was a baby. Her dedication to his care has earned her the National Prize from the Debra Association, which she will receive on October 17 in Estepona, Málaga. The award recognizes her compassionate approach, integrating play and emotional closeness into the treatment process to help alleviate Karim’s pain during medical procedures. The condition, which causes fragile skin that blisters easily, has presented Zulema with significant challenges. Initially unfamiliar with the disease, she received training from a specialized team at Hospital La Paz in Madrid. This support enabled her to develop a care routine that balances medical necessity with emotional comfort. She described the early stages of her work as “very difficult,” emphasizing the physical and psychological toll of managing such a rare and complex disorder. Karim's resilience has been a driving force behind Zulema’s commitment. Despite the daily struggles, she credits the boy with showing her that life can still be lived fully even with severe health limitations. “He has shown me that it is possible to live like everyone else,” she said, highlighting the transformative impact of their relationship. Her efforts have not gone unnoticed, culminating in the prestigious recognition from Debra, an organization dedicated to supporting patients with rare diseases and their families. Zulema chose nursing because she has always wanted to help others. Her motivation stems from a deep sense of purpose rather than personal gain. She believes that increased awareness of epidermolysis bullosa is essential to reduce stigma and improve public understanding. “It would be great if more people knew about this disease so that barriers could be removed,” she stated, underscoring the importance of education and empathy in healthcare. Her work takes place in a small rural community, where access to specialized medical resources is limited. This context adds to the complexity of her role, requiring her to rely heavily on both professional guidance and personal determination. The local health center in Villamuriel de Cerrato serves as a critical hub for her ongoing care, offering a space where she can provide consistent support to Karim while also engaging with other patients and families facing similar challenges. The recognition from Debra comes at a time when advocacy for rare diseases is gaining momentum globally. Zulema’s story reflects broader efforts to humanize conditions often overlooked by mainstream society. By combining clinical expertise with heartfelt connection, she exemplifies how compassion can drive meaningful change in healthcare. Her journey underscores the vital role of caregivers in improving the quality of life for individuals living with chronic and debilitating illnesses.