Meet the Rawson Family

Meet the Rawson Family


Jo and Rick Rawson have three gorgeous children, Mila, Everley and Arlo. But their home life is very different compared with most families.

Everley was born with multiple complications and spent the first six months of her life in hospital. Aged ten months, she was diagnosed with Kabuki syndrome, a rare, multisystem disorder. Now three and a half, Everley receives ongoing medical care and is looked after at home by her loving parents and siblings.

“We were told pretty much the worst-case scenario when she was a couple of weeks old,” says Jo. “She’s not going to walk, not going to talk, she’s probably going to be wheelchair bound.”

Kabuki syndrome can cause numerous underlying medical issues that need constant intervention and close monitoring. The family’s logistics are challenging; Rick works full-time, Jo tries to fit in 20 hours of work a week, while Mila attends primary school and Arlo has day care.

That’s why Very Special Kids is so valuable for the Rawsons. With practical support, assurance, and some welcome time out, the family knows they are not alone in their journey.

“A maternity health nurse said Very Special Kids will be good for us,” says Jo. “I’ve met other families in similar situations at the coffee mornings, which has been fantastic because sometimes it’s a lonely journey, especially as parents. I also catch up with Libby, our Family Support Practitioner.”

The Rawsons reserve special praise for their family support volunteers, Coral and Simone. Jo gets a much-needed break when Coral visits once a week to look after Arlo, while Mila is taken on outings by Simone (who is “loved and adored,” says Jo).

According to her parents Mila has benefited greatly from the Sibling Program, looking forward to every opportunity to mix and play with other kids. The Holiday Program is also important, says Rick and Jo, because of the support and encouragement Mila receives.

“It’s organisations like Very Special Kids that have helped us enormously,” says Rick. “You sort of think to yourself, where we would be had these guys not been involved?”

Despite the 23 surgeries and interventions, the prognosis for the quality-of-life Everley can experience is more optimistic than originally thought.

“Everley is stronger than what we were initially told she was going to be,” says Rick. “Walking and trying to communicate is over and above what we were expecting. So we’re pretty lucky in that.”

Jo is emphatic with her message about Very Special Kids.

“Please donate,” she says. “It’s an amazing cause. Just knowing that there’s someone that you turn to and say, ‘I need help’. It’s incredible to know that there are people out there giving up their time with their family to come and spend time with our family. That’s pretty special.”

“Everley is an amazing little princess, daddy’s girl, but in saying that, dad has shed a few tears over the journey,” says Rick. “You never want to see your kids come to harm. So don’t ever feel like you’re alone, because Very Special Kids have made such a difference.”