Hi! My name is Oscar, and I was born with the most severe kind of Spina Bifida. My doctors had no faith in me surviving, but I did. I am now going to need an extensive surgery to try to help my spine, and my brother Ben is going to run a 42 km marathon on the 12th of November 2022 to raise money for my surgery

A little more about Oscar and his condition

His condition is spina bifida, the most severe kind. Its official name is myelomeningocele. The first scan showed a very deformed spinal column when he was in the womb. We did tests for genetic disorders, and all were clear. They couldn't make a diagnosis but said he would most likely die before birth. When it came time months later for the Cesarean section, they warned us he would, unfortunately, be a stillbirth. Thankfully this was not the case. After birth, Oscar was placed straight into the recovery ward, where he was not allowed to be held for a couple of hours. We were informed that he would not make it past Friday.

After hours of waiting downstairs in the ICU, when we visited him, he was in an incubator with wires and tubes, lying face down, and his entire back was covered in layers of bandages. His little legs and feet were tilted 90 degrees sideways, so we were allowed to touch him. He was the smallest baby I had ever seen. He was born with an opening from his neck down his tailbone, exposing all his vital organs. For two weeks, we were allowed to take him out of the incubator and hold him skin to skin with all the wires and tubes still connected. They said he would die of meningitis which they would be unable to prevent entering his exposed spinal column as it is everywhere in the air.

Weeks had passed, and he was still fighting for his life, but unfortunately, he took a turn for the worse. A special Chaplin was called, and in the incubator, he was given the last rights, and we held candles, oil and water as he was baptised. A few weeks passed, and slowly over 2 months no meningitis, his skin began to close over and seal the hole. Tissue was forming underneath and after 3 months they declared he would live. He was the miracle of Holles street and Temple street hospitals. The boy who shouldn't have made it and he did it all himself.

Then one day we were allowed to take him home, the neuro surgeon explained his spinal cord was trapped, fused to his skin and as he grew it would become damaged and he would lose even more control of his legs, lower body, bowels, bladder . The surgeon said they could not even attempt this surgery in Ireland and the only thing he could offer was to amputate his spinal cord leaving him paralysed for life. We refused. Never.

From there we talked with the surgeons about a life of surgery he was facing to straighten his legs, fix his webbed hands and feet, remove an extra giant toe growing from his ankle, straighten his spine and neck so he might be able to sit up one day.

The bone surgeon doctor green is an excellent surgeon and was putting together a roadmap for his legs, his feet, his hands, neck and straightening the spine. He was put into physio. He had surgery on hands and feet. He started wearing permanent casts on his legs every week forcing his legs straight while the bones were still soft. Over 6 months wearing boots and bars 18 hours per day and hard casts 24 hours per day his legs straightened.