Imagining that your child is suffering from a rare medical condition is a nightmare no parent should ever endure. For one humble family in the Brazilian municipality of Angatuba, São Paulo, this heart-wrenching reality has become their daily struggle. Luna Oliveira Barros, just three months old, has been diagnosed with Apert Syndrome, a congenital disorder that affects the skull, face, hands, and feet.
The clock is ticking for little Luna as she urgently requires a cranial operation before her first birthday to prevent lasting complications. However, this surgery comes with a substantial cost of nearly $20,000, an insurmountable sum for her family. While Luna could potentially undergo the procedure through the government-funded Sistema Único de Saúde (SUS), the waiting list is long, and her condition is progressing rapidly.
Currently, approximately 120 patients are ahead of Luna on the waiting list, and she cannot afford to wait much longer. Faced with this challenging situation, Luna’s family has launched a social media campaign to raise the necessary funds for her to receive treatment at a private healthcare facility.
Apert Syndrome is a rare genetic disorder resulting from a mutation during fetal development. Luna’s mother, Cassiana Oliveira Leite, described the family’s initial shock upon discovering the condition: “It was a calm pregnancy, and we had no issues. We had regular medical check-ups and were unaware of the syndrome. But Luna had breathing difficulties, so she was transferred to São Paulo and hospitalized. That’s when we found out that her skull hadn’t developed, and she needed surgery.”
However, Luna requires more than just one surgery; she also has a cleft palate and syndactyly of her hands and feet, meaning her fingers are fused together. For now, she is receiving care at home.
Thankfully, Luna’s case has stirred compassion in the community, and donations have begun pouring in. The fundraising page shows that more than half of the required funds have been raised so far. While there is still a way to go, there is hope that Luna will soon receive the surgical intervention she urgently needs.
Please help us spread the word about Luna’s story. Your support, in any form, brings new hope to Luna and her family. Together, we can make a difference in this young child’s life.