Isla Wells has always marched to the beat of her own drum. Born with apert syndrome, the five-year-old has already endured 13 life-saving surgeries.
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For years her mother and sole carer Kylie Wells was told her daughter would never walk. Then, one day, "she just got up and did it".
"When she puts her mind to something, there's no stopping her," Ms Wells said.
"It was about two years ago now. We got her a little pram walker, with a baby to push around, and before we knew it she was up and walking.
"I cried for days and days after that happened. It surprised everyone."
Apert syndrome is a genetic disorder that causes webbed hands and feet and the early fusion of the skull, affecting the shape of the head and face.
In July Isla will undergo further surgery on her hands to help with her movement. As she gets older she will also require more surgery on her feet and hips.
Along with her 14-year-old-son, Ms Wells said sometimes the family needed to travel interstate as much as three times a year for Isla's treatment.
"Melbourne is where we have to go, all the time," she said.
"Even just for follow-up visits, we still have to go over. Unfortunately we can't do the majority of it through telehealth, just because there are no specialists here in Tasmania.
"She needs a neurologist, a craniofacial surgeon, plastic surgeon, kidney specialist, heart specialist - a whole team.
"When she had ear surgery the year before last, we went for a review and ended up being there for two weeks. It all adds up."
In the coming months Isla and her family will be the focus of two fundraising events organised by Foundation33inc, starting with a trivia night at Trevallyn Bowling Club on June 22.
Then in August, Isla will be the guest of honour at Foundation33inc's annual fundraising cocktail party.
Foundation president Grayson Genders said the community always came together to support those in need.
"Anything we can do to help Isla and her family, we want to get behind her," he said.
"Whether through securing additional equipment or care options, we will work hard to help them."
Last year Foundation33inc's cocktail party raised more than $10,000 for Arthur Long, who lost his feet and part of his right hand after contracting meningococcal shortly before his second birthday.
Ms Wells said it was a "lovely surprise" to learn the foundation wanted to help Isla.
"It really does make a difference knowing the support is there," she said.
"One of my biggest fears is that when I am no longer here, if something happened to me, then what would happen to her. But the community is sensational. It helps me sleep at night."
For more information or to help sponsor an event, visit foundation33.org.au.
Jessica Willard
Being a health reporter to me is about more than just reporting the problems. It's about asking why they are happening in the first place and what needs to change to fix it.
Being a health reporter to me is about more than just reporting the problems. It's about asking why they are happening in the first place and what needs to change to fix it.
