Tasmania’s Van Burling diagnosed with Angelman Syndrome

A “joyous and loving” Tasmanian boy may never be able to talk or walk, but his parents are in awe of his bravery as a whole community unites behind the family.

A “joyous and loving” Tasmanian boy may never be able to talk or walk, but his parents are in awe of his bravery as a whole community unites behind the family.

Van Burling was 14 months old when he was diagnosed with the rare genetic condition Angelman Syndrome.

Children with the condition often need extensive therapy to learn how to walk, talk and swallow.

Parents Claire Taylor, 32, and Jarrad Burling, 34, said the diagnosis turned their world upside down.

“It was soul crushing really, you just don’t expect that sort of news to come your way for some reason,” Ms Taylor said.

“You hope for the best and just think they’re a little bit behind in their development. But it was just devastating, we went into full shock for a while.”

The now 26-month-old still can’t walk or talk, and attends ongoing medical appointments.

“Life has just changed dramatically. You realise you’re now the carer for your child for the rest of your life,” Ms Taylor said.

Van Burling.

Van Burling.

“Most parents expect their child will move out and be independent at some point, but that’s not possible with children with Angelman Syndrome.

“It’s a massive journey ahead for us and it’s been a huge transition.

“In some ways it makes you realise what’s important as well. It makes you more fine tuned; you’re not as worried about minor things anymore because they become so insignificant.”

The Huon Valley couple are now “focused on giving him the best life possible”.

“You have this future imagined for them … he might learn a few words at most and it takes a lot of acceptance to come to terms with that as a parent.

“We’re hopeful he might be able to walk one day, but it’s still unknown at this early stage.

“We’re having a lot of early intervention and therapy to help him out and get him moving independently.”

Ms Taylor said despite his condition, Van was proving to be a shining light for the first time parents.

Jarrad and Van Burling.

Van Burling and Claire Taylor.

“We have the most joyous and loving little boy. His smile alone gets you through the dark days.

“He’s really cheeky and just nothing but love. He very rarely gets upset.

“Sometimes he’ll be awake all night and it’s hard to get upset with him when he’s just there smiling and giggling. That’s the thing that gets you through all the harder times.”

A GoFundMe page has been launched to help the family pay ongoing bills related to Van’s treatment.

Ms Taylor said she had been overwhelmed with the support, with more than $50,000 raised already.

“It’s just so hard to believe. We’ve just been in shock. We did not expect such generosity.

“We’re so grateful we have that kind of community. It just takes that burden off.”