In Nicaragua, the stories of sisters Génesis Milagros Sánchez Villavicencio and Alexa María Rivas Mairena have drawn attention for the remarkable ways they have learned to navigate everyday life without fully developed upper limbs.

Génesis, who lives with her parents in Diriamba, Carazo, was born in June 2021 with phocomelia, a rare congenital condition affecting the development of the limbs. According to La Prensa, doctors warned her parents before her birth that she might survive for only about an hour and a half. Despite that grim prognosis, Génesis reached her first birthday in June 2022 and was developing new ways to feed herself and handle objects using her feet.

Her mother, Margarita Villavicencio, and father, Maycol Sánchez, chose to raise their daughter without hiding her condition. Génesis was born with four toes on each foot and has gradually learned to use them with increasing precision. At just one year old, she was already experimenting with picking up food and bringing it to her mouth independently.

Alexa’s story began several years earlier. Born in February 2017, she was also diagnosed with phocomelia affecting her upper limbs, with complete absence of one arm and severe underdevelopment of the other. She also has scoliosis and has required an orthopedic brace to help control the curvature of her spine.

Rather than allowing her physical differences to prevent her from participating in ordinary childhood activities, Alexa learned to use her feet and toes as tools. By the age of five, she was attending school, writing in her notebooks, reading, singing, dancing and even combing her hair by herself. Her mother recalled discovering early in Alexa’s childhood that she could use her feet to grasp objects, an ability that became an important part of her independence.

The two families eventually brought the girls together. Alexa had believed she was the only child without arms until she met Génesis. Their meeting gave both girls the unusual experience of seeing someone who faced many of the same challenges. Their mothers also found support in sharing their experiences of raising children with rare limb differences.

Medical specialists have not established a definitive cause for the girls’ conditions. La Prensa reported that their families said there was no known family history of phocomelia. The condition itself is characterized by abnormal development or absence of portions of the limbs, although its causes can vary.

The sisters’ experiences also highlight a challenge that extends beyond medicine: social attitudes toward disability. Their families have spoken about unwanted attention and hurtful comments, while emphasizing the importance of allowing the girls to grow up with confidence rather than feeling ashamed of their bodies.

Génesis and Alexa’s stories are therefore not simply about overcoming a physical difference. They demonstrate how children can develop remarkable adaptive skills when they are given encouragement, education and the freedom to explore what they can do. For Alexa, her feet became tools for writing, grooming and play. For Génesis, they became an early means of feeding herself and discovering independence.

Their journeys continue to remind those around them that disability does not erase a person’s ability to learn, participate and build an independent life.

Source: La Prensa (Nicaragua), “Génesis y Alexa, las niñas que aprendieron a vivir con una rara enfermedad,” July 10, 2022