Akeira’s amazing journey

A creative eight-year-old, Akeira is a star RCH patient and fundraiser.

Born premature, Akeira was diagnosed at birth with a rare congenital condition called Goldenhar Syndrome that disrupted her in utero development. As a result, Akeira has hearing loss in both ears, facial abnormalities, issues with her speech and only one kidney. Though Goldenhar Syndrome typically manifests itself on one side of the body, Akeira is affected bilaterally, with predominance on her left side.

At four-years-old, another congenital condition became apparent. Two bouts of severe pancreatitis led to a diagnosis of Choledochal cysts, congenital bile duct anomalies. Doctors decided to surgically remove the cysts and bile duct. To prepare for the operation, Akeira was not allowed any food or water for two weeks prior to surgery, a difficult ask for a high-energy kid.

“Even though this was a tough time for Akeira, she only seems to remember the good stuff,” says mum Felisia.

“All the crafting, play therapy, her favourite RCH nurses and doctors. That’s what made an impression on her and, to me, that’s amazing.”

Akeira has, even from a young age, shown remarkable dignity in the face of difficulty. Felisia found the many looks and comments sparked by her daughter’s facial abnormalities daunting. Though she would get upset, Akeira always handled the situations with poise.

“Her condition has never really bothered her. When she was younger, people would say ‘what’s wrong with her’ and I’d get so upset, but she’d just kindly explain it to them and educate them. It was amazing.”

Akeira now wears hearing aids in both ears and has a full range of hearing. She’s also undergone extensive dental and speech pathology work to ensure her speech is unaffected.

Last year, Akeira underwent the first of many surgeries to correct her facial deformities, with skilled craniofacial surgeon Dr Jonathan Burge. Fat was transferred from her inner thighs to the left side of face to help disguise the underdeveloped side. This is a cosmetic procedure to mask the abnormalities until she’s old enough for surgery to correct her facial asymmetry.

“It’s treating patients like Akeira that give me the greatest pleasure in my job”, says Dr Burge. “Helping Akeria reach her maximum potential and seeing her beaming face and positive attitude every time she comes to clinic is nothing short of amazing.”

Akeira will have additional surgeries to correct her facial asymmetry in late 2016.

“The doctors, staff, the facility are all amazing, but more than that, I trust them,” says Felisia. “They don’t just fix the physical problems, they look after a child’s emotional wellbeing. I’d always thought hospitals were horrible, but Akeira’s never felt that. They look after her happiness at the RCH and she’s happy there.”

Akeira’s love for the RCH has never been more apparent than her seventh birthday party. Stating that she didn’t “want any presents, I want to ask for donations to the RCH”, Akeira turned the celebration into a fundraising party for the hospital. She raised an amazing $250 and inspired some of the mums attending to host fundraising parties for their child’s birthday. Delighted by what she raised, Akeira and her family plan to host a high-tea themed RCH fundraising party every year.

“We’re grateful for anything we can do,” says Felisia. “The RCH is the best hospital with the best doctors. They are so dedicated because they love what they do and we’re glad we can do something to support that.”

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