Naylet is a young Caribbean woman, a mother of two beautiful children, Osnel and Nasly. They were born prematurely at 30 weeks of gestation in May 2018. Brother and sister were transfer to the neonatal intensive care unit in a local hospital. They were with a low birth weight of 3 pounds. Nasly, the baby girl recovered well.

However, Osnel spent 67 days in the intensive care because he had his first seizure and intraventricular hemorrhage (IVH – bleeding of the brain) at 16 days after birth. In addition, he needed a blood transfusion due to anemia and ventilator for 9 days. As a new mom recovering from a C-section delivery, my cousin was very scared not understanding why baby Osnel was in a ventilator, needed transfusion and experiencing seizures while his baby sister Nasly was recovering faster. Ultimately, he was discharged with antiseizure medication (phenobarbital) weighing only 5 pounds.

Naylet was terrified and confused not knowing how to face the challenge of raising two children and one of them with severe health problems. She moved to her mother’s house for emotional support and care for sick baby Osnel and Nasly. After intensive care unit discharge, baby Osnel had monthly follow-up with neurologists to address his ventriculomegaly (enlargement of the brain ventricles). Nobody could tell my cousin what to expect in future for baby Osnel.

As time went by, Osnel was treated in multiple hospitals and clinics where he was diagnosed with a retardation in psychomotor development. At his current age, almost three years old, he can’t fix his gaze on bright objects, can’t follow his eyes, can’t hold his head, can’t sit upright, can’t hold objects in his hand, can’t turn on his abdomen, can’t gurgle or say words, can’t stand, can’t walk, and he gets fed by a gastric tube. At 7 months, his medication for seizures were switched to sodium valproate and clonazepam leading to gastritis. In August 2019, the neurologists identified that Osnel had a multifocal epilepsy very difficult to control and he was probably blind from both eyes. More seizure's medications were recommended by treating physicians.

In November 2020, he was hospitalized again because Osnel was having multiple seizures a day, despite the anticonvulsant treatment. Then, a brain MRI (Magnetic Resonance Imaging) was performed. It was observed that Osniel has cerebral atrophy (primarily on the white matter), both optic nerves appear to be hypoplastic (underdevelopment of the optic nerves), absence of corpus callosum, and hypoplasia of the cerebral midline structures allowing the diagnosis of Septo-optic Dysplasia (SOD). Specialists mentioned that considering all the symptoms that Osnel has experienced since birth, he is on the severe end of SOD.

SOD is a rare congenital anomaly affecting 1 in 10,000 newborns. There is no cure for SOD, the treatment is designed only to address the symptoms associated with it. Early detection and intervention can help affected children to reach their full potential. Osniel was not that lucky and his diagnosis happened a few months ago. His access to medications and therapies is limited, he needs a multidisciplinary team of health professionals that help him improve his quality of life.

There is a Hope for Osnel. In the US, there are multiple hospitals that provide treatment as part of the standard of care, in Caribbean this is a dream. That’s is why our family in Miami decided to help Osnel to come to the US under humanitarian parole hoping to provide a better life for him. Osnel’s family doesn’t have the funds to pay for the treatment costs. We tried to secure a Global Health Insurance, but he was rejected for pre-existing conditions. Osnel needs a lifelong treatment and medication follow-up.