It was during an ultrasound at 18 weeks gestation that the parents of 17-year-old Kuraby triplet, Mark, found out he had a neural tube defect, where the foetal spinal column doesn’t close completely. Doctors would later confirm that Mark had thoracic spina bifida with caudal regression syndrome – a congenital disorder in which there is abnormal foetal development of the lower spine, leading to problems with things like walking and bladder and bowel control.
As Mark was a triplet, it was hard to see the extent of the defect. Mark and his triplet sisters Pamela and Peta were delivered at 32 weeks gestation, with Mark weighing just 1120 grams. His parents, Maria and Nick, were told he was extremely fragile, that he probably would not live for long and that they should enjoy the short time they would have with him.
But Mark was a fighter from the very beginning.
“When Mark was about a week old, he got a nasty infection and we actually thought that he wouldn’t last. Mark fought off this infection with no antibiotics,” Maria said.
Maria and Nick were told there wasn’t much chance of Mark communicating or moving independently because his disability was so severe. Mark then spent the first eight weeks of his life in the Neonatal Intensive Care Unit and then was in and out of hospital for the next two years, often getting sick.
Despite the odds, Mark persevered. At the age of two, he was making all of the normal milestones, with above-average speech. He soon received his first wheelchair, which was the beginning of his independence.
Mark has since suffered a few health hiccups over the years (including restrictive lung disease, which hinders lung expansion and oxygen intake), but has always pulled through to continue enjoying his passions – fishing, swimming, woodworking and reptile research.
“Mark has been so fortunate to receive exceptional medical care from the Lady Cilento Children’s Hospital. His main clinics are the sleep unit and spinal clinic – both of these clinics are second to none. Nothing is too much to ask, they are always there to provide whatever Mark needs. The continuity of care Mark has received is excellent,” Maria said.
Mark is now in Year 12 at Runcorn State High School and is set to receive his Queensland certificate of education (not modified). He even has a Certificate 3 in Engineering from working on a formula student program and can’t wait for his Year 12 formal and graduation.
Mark lives by the motto ‘just do it’.