The announcement of our pregnancy brought immense joy, yet it was also accompanied by a wave of anxiety. At home, two sisters were eagerly anticipating the arrival of their little brother. One was a teenager, while the other was just a year old, brimming with energy and demanding much of our attention. As a family of four living in a compact two-room apartment, we already felt the squeeze, and we understood that welcoming another member would present its own challenges. Nevertheless, we embraced the change with hope, believing we could adjust.
However, the reality we faced was far more daunting than we had anticipated.
During the second prenatal check-up, doctors identified concerning abnormalities. Our son’s hands and feet were malformed, and he was missing fibulae. For the first time, we confronted the terrifying possibility that our child might never walk. The uncertainty and fear in that moment were suffocating, and one question lingered in our minds: “Will our child ever walk?”
The series of tests that followed only intensified our fears. Our son’s facial features did not align with those of a healthy child, and various other abnormalities hinted at a potential rare genetic disorder. As a family, we endeavored to remain optimistic, but with each test, the reality seemed to drift further from the dream we had once envisioned.
In the third trimester, a geneticist, after reviewing our family history and Benio’s symptoms, suspected a specific genetic defect. The worst news arrived: the doctors confirmed the genetic condition, and our deepest fears had materialized.
Benio was delivered via cesarean section and immediately taken to the neonatal unit, where he was placed on a CPAP machine to assist with his breathing. His first cry was faint, and the medical team struggled to stabilize his condition. My son was born with severely deformed limbs. His bones were abnormally curved and shortened, and while his face was the most beautiful to us, it developed abnormally. His eyes were widely spaced, his ears were low-set, and his facial profile was flattened with a tiny nose and a receding chin—features that made daily life incredibly challenging.
As parents, we are uncertain how long our special little boy will be with us, but we are committed to doing everything possible to provide him with the best life. To ensure Benio’s future independence, he needs daily physical therapy, as well as hearing, vision, speech, and respiratory therapies. There are numerous appointments with specialists, many of which we must arrange privately due to limited resources.
Moreover, we aspire to enroll him in specialized rehabilitation programs, where children receive intensive daily therapy. However, the cost of even a short, 10-day stay in such a program is exorbitant, and we simply cannot manage it alone.
We never envisioned ourselves in this position, reaching out for help. Yet, our love for Benio and our desire to provide him with the best possible opportunities drive us to seek support from others. He is our little warrior, battling each day for a brighter future, and we are fighting alongside him.
That’s why we are reaching out to you, with heartfelt gratitude and hope, to ask for your support. Your contributions, no matter how small, will significantly impact Benio’s life. They will help cover the expenses of his rehabilitation, treatments, and essential therapies that will enable him to live with as much independence and joy as possible.
Each day, we witness our son’s struggles, but we also see him smile, give his all, and display resilience beyond his years. We believe in his strength, and we trust that, with your assistance, he can achieve the future he deserves.
Please, join us in supporting our son. With your help, we can enhance Benio’s life and equip him with the tools to face the world with strength, courage, and the hope of a brighter tomorrow.
Thank you for standing with us and for Benio. Your kindness means everything to us.
