Two-year-old Amara-Jane battling Myofibroma after several misdiagnoses

A southeast Queensland couple is warning parents to follow their instincts after their baby, who suffers from a rare disease, was misdiagnosed several times, delaying the beginning of treatment.

Deception Bay toddler Amara-Jane is fighting rare disease, Myofibroma.

A new mum is urging parents to follow their “gut feeling” after her baby, who developed a rare disease, was misdiagnosed four times.

Amara-Jane was only 18 months old when mother Annalyse Lieschke noticed something wasn’t quite right with the normally bubbly tot.

In February, Ms Lieschke and her partner Rhys discovered a lump and soon bruising on her face near her eyes and nose began to appear.

The couple, from Deception Bay north of Brisbane, initially thought it was conjunctivitis.

Amara-Jane was taken to hospital several times and received several different diagnoses.

Deception Bay toddler Amara-Jane is fighting a rare tumour called Myofibroma.

“We didn’t get any answers, Amara was given medication and told she would be fine,” Ms Lieschke said.

The truth was far more dire, and the concerned couple took their baby to the Queensland Children’s Hospital where she underwent an urgent MRI – it was only then that doctors discovered she had a rare tumour called Myofibroma.

“You feel like you are throwing your head against a brick wall, just thinking something is not right and no one is listening to you,” she said.

“It’s a really hard thing to go through that’s for sure.

About 1 in 150,000 children are diagnosed with Myofibroma, which can make them difficult to treat.

The tumours typically grow in the head and neck area but can develop anywhere in the body.

Deception Bay toddler Amara-Jane is fighting a rare tumour called Myofibroma.

“Unfortunately Amara’s had grown on her face, pushing her eye out of place causing double vision as well as crushing her nasal bone,” her worried mother said.

“It being benign is definitely a relief with what it could have been. They said to us, prior to her first surgery, that if it was cancer her whole eye would have been removed.

“(We had) never heard of (it), it’s not something you actually prepare for when you’re having a child.

“You just don’t expect it to happen to you.”

The tumour developed into the size of a golf ball before Amara had her first surgery in May this year which the couple believes was successful at removing the tumour.

It has however left her with no right nasal bone and a deviated septum causing some breathing issues, she will also need nasal reconstruction when she is older.

Deception Bay tot Amara-Jane and mum Annalyse Lieschke.

The 24-year-old mum says the now two-year-old could have to endure chemotherapy or radiation should the tumour return.

“They don’t know (what the likelihood is of it growing back) they can’t give me an answer,” Ms Lieschke said.

“It sort of puts your whole life on hold not knowing what’s going to come next and where you’re going to be.”

Ms Lieschke said her beautiful little girl didn’t really understand what was happening to her.

“She’s a crazy, happy, full-on little girl,” she said.

“So adventurous yet clumsy at the same time, she’s full of life.

“She understands when we’re going to the hospital and we see doctors, when they do her observations she’ll stick her foot out and go ‘beep beep’ and that sort of stuff.

“She understands as much as she can take in.”

Amara-Jane in hospital after treatment.

The duo is urging other parents to follow their instincts when it comes to their little ones.

“Amara is our first child, we went into this as new parents, not knowing what to expect and just winging it as most parents are doing,” she said.

“If you have a gut feeling that something is not right with your child and you’re not getting the answers you think you need … you push for that second opinion, you find out and you get to the bottom of it.

“Just because someone is in that medical field and is telling you one thing doesn’t always make it right.

“If we left this with Amara and listened to that one hospital who knows how big it would’ve gotten and the damage it would’ve done.”

To care for the tot during the ordeal, Ms Lieschke was forced to stop working.

Her partner, Rhys, 31, works full-time but she admits it’s hard to make ends meet.

A GoFundMe has been launched for the family with $995 raised so far from 13 donors.

To follow Amara-Jane’s journey or help out visit this link.