Eight-year-old Zayviar from Redbank Plains is living with an extremely rare x-linked chromosomal defect – a condition that affects only seven people in the world, who are all within Zayviar’s family.

When Zayviar’s mum, Veronica, went in for her routine scan at 13 weeks pregnant, doctors noticed something wasn’t quite right. From this scan, doctors monitored his growth and heart until he was born via caesarean at 38 weeks. Within minutes of his birth, a specialist genetics team officially diagnosed Zayviar with CCDC22, along with multiple other rare disorders, including Dandy-Walker syndrome, and aplasia cutis congenita. Zayviar was also diagnosed with scoliosis and extraverted hips when he was a few days old.

Due to the combination of Dandy-Walker syndrome (a congenital brain malformation causing excess fluid to build up), and aplasia cutis congenita (a condition which has resulted in Zayviar missing part of his skull), Zayviar has had to constantly wear a helmet, which he referred to as his “best friend”.

However, he recently had surgery to fix his skull defect and he is now helmet free. He continues to visit multiple teams twice a week for regular check-ups – mainly plastic surgery and neurology to monitor some pressure on his brain. Zayviar is also scheduled to receive another skin graft on his skull soon.

“Zayviar is such a strong little trooper; he takes on everything that is thrown at him, with absolutely everything he has. When something knocks him down, he just gets up with even more fight,” Veronica said.

In between his regular appointments at the Queensland Children’s Hospital, you will often find Zayviar hanging out with the Captains in the Starlight Express Room.

“Starlight is a huge uplift for Zayviar to get through the next procedure or appointment. If it wasn’t for Starlight and the staff at the hospital, there is no way we would be where we are today – able to continue treatment with ease.”

“Zayviar has taught us to never give up, even when times are tough!” Veronica said.

When he’s not in the Starlight room (and sometimes when he is), or taking part in the Children’s Hospital Foundation’s bedside play program, Zayviar loves to play police – arresting people, putting them in jail and giving them fines.

Rare Voices

Rare Disease Day

Dandy Walker Foundation