Panamanian girl with rare disease needs help to improve quality of life

Gabriela Chirú, a young girl in Panama, faces daily challenges due to Coffin-Siris syndrome, an extremely rare genetic condition diagnosed shortly after her birth. This syndrome can lead to intellectual disabilities, developmental delays, and physical anomalies. For Gabriela, it has meant a life requiring specialized care, specific dietary needs, and constant medical attention.

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She was born purple, she didn't cry either. She was suffocating, but I didn't understand anything. She spent nine days in Amador Guerrero and from there, looking for the cause, they transferred us to the Hospital del Niño.

Her mother, Carmen Chirú, recounted the difficult start to Gabriela's life. Born with respiratory distress, she required immediate hospitalization and a tracheotomy to ensure she could breathe. Since then, managing Gabriela's medical needs has become a daily routine for her parents. They require essential supplies for her tracheostomy, including specialized tubes, to prevent complications and manage secretions directly entering her lungs.

The family's living conditions also present obstacles. Gabriela's parents are appealing for help to adapt their home and acquire necessary items such as a bed, fans, and other medical equipment to improve her quality of life. Despite these hardships, Gabriela's father, Gabriel Andrión, works tirelessly in various jobs, including fishing and construction, to provide for his family, though he lacks stable employment.

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She needs supplies for the tracheostomy, she uses some tubes. At least we use one per day, but that is not recommended because it is an open area that goes directly to her lung to suction secretions and so she is not at risk of agitation.

Gabriela's older brother, Gabriel, also contributes by using his talents to support his sister. The family remains hopeful that compassionate individuals will assist them in obtaining the much-needed supplies and equipment for Gabriela. Donations can be made to Banco General account 03-73-01-119519-8. The family emphasizes that any contribution, made from the heart, will significantly help meet Gabriela's needs.

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When I am with my family I feel very happy and, if I had to ask someone for something, it would be that the things they are going to donate or give, they do it from the heart.