Zayviar

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Zayviar and mumA typical week for Zayviar's family involves juggling two different schools, doctors' and hospital appointments and demanding medical routines for five children.

Mum Veronica says they don't have the usual social life that many families have.

Zayviar was born with the extremely rare genetic condition CCDC22 which affects brain development. He also has a brother with the same condition.

Veronica said they were aware of Zayviar's genetic condition before he was born, but were hit with the devastating news that their little boy had further health complications relating to his head.

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We were in shock when within 24 hours, doctors told us there was more to Zayviar's condition. We couldn't believe we were in for even more medical pressures - it was a lot to absorb.
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Zayviar's mum, Veronica

At seven, Zayviar may be the second youngest in the family, but Veronica says he holds his own when it comes to being talkative!

"Zayviar is intellectually impaired so he comes across much younger than his age. He's really outgoing and has an infectious, loveable personality," she said.

To manage Zayviar's condition, regular hospital visits have been part of his life since he was born. The gruelling weekly trips to hospital in Brisbane were extremely hard on the family of seven, so they made the difficult decision to relocate.

Zayiar in hospital

"Leaving our home town and moving to the city was really tough on us all, but it meant we could be closer to the Lady Cilento Children's Hospital (now Queensland Children's Hospital)," Veronica said.

One bright light during all of Zayviar's hospital treatment has been discovering Starlight. The Starlight Express Room has become their "escape." Veronica said the impact on them all has been incredible.

Zayviar and siblings in Starlight Express Room

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Our family wouldn't be where we are today without Starlight's support. Starlight is the only bargaining chip we have as parents to convince our kids to return to hospital and comply with treatment. We say if they do what the doctors say, they'll get to visit the Starlight Express Room, and it works!
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Zayviar's mum, Veronica

Zayviar and his brothers love playing Mario Kart in the Starlight Express Room, and when Captain Starlight visits him on the wards they paint his face, blow bubbles, play cards and make him laugh. Mum said: "The Captains make him feel super special and call him Zavvy which he just loves!"

Zayviar and Captain Starlight

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.  > Make a Donation

 

Having Starlight in hospital gives the family a much-needed break, helps them relax and helps lifts Zayviar's mood.

 

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Zayviar literally counts down the hours until the Starlight Express Room opens, and is the first kid in and the last to leave! Even if he can only squeeze in a half-hour visit between treatment or clinics, it's enough to pick him up.
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Zayviar's mum, Veronica

 

The family are so grateful to Starlight supporters and Veronica said as parents, it means so much to her and Patrick to know that the kids are happy and distracted from their illness.

 

Zayviar and siblings with Captain Starlight

 

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Thank you and please donate! Our family wouldn't have smiles and fun in hospital without Starlight. We rely on their services. With Starlight, they forget all the horrible medical things and they get to have the everyday fun that all kids need and deserve.
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Zayviar's mum, Veronica

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.  > Make a Donation

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
> Make a Donation

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