Father demands health system overhaul after daughter loses cancer battle

The father of a four-year-old girl who tragically died after her cancer was misdiagnosed has spoken out about his heartache.

The devastated father of a four-year-old girl who died last week from a rare cancer is calling for an overhaul of the state’s health system after she was misdiagnosed for months.

Jamie Lewis is still in shock over the loss of his daughter Emerara Kennedy who died on September 20.

“I just keep thinking she’s still here; I can’t believe it,” he told NCA NewsWire.

Emerara and her mother had gone back and forth from Maryborough Hospital on the Fraser Coast for four months demanding answers over health.

But they were repeatedly told she had nothing more than a urinary tract infection.

By November, Emerara’s health had seriously declined and then Mr Lewis received the phone call no parent ever wants to receive – Emerara had stage four neuroblastoma.

Jamie Lewis with his daughter Emerara, who passed away last Tuesday. Picture: Supplied

Mr Lewis, who had been working in the mines in Mackay, quit his job and flew down to Brisbane to be with Emerara while she started chemotherapy.

Emerara’s mother had watched as her bright and smiley four-year-old lost weight and became more distressed by the pain.

In November, Emerara’s mother, Stevee Kennedy, finally snapped and refused to leave the hospital before doctors ran more tests.

It was then that a biopsy revealed Emerara had cancer.

Emerara was initially taken to hospital for pain in her abdomen. Picture: Supplied

Her mother was told Emerara had a UTI. Picture: Supplied

She was finally diagnosed with stage four cancer in November. Picture: Supplied

A brave, warrior girl

Before her diagnosis, Mr Lewis said people would always say it was like Emerara had “been here before”.

“She was such an old soul, so witty and so clever,” he said.

Emerara loved ballet, learning to ride her bike and sometimes sitting on her dad’s lap while he pretended to drive his truck.

“She made me into the person I am today and the father I am today,” he said.

Emerara was described as an ‘old soul’. Picture: Supplied

She was described as incredibly brave throughout her treatment. Picture: Supplied

Even after the cancer diagnosis, when she was in excruciating pain, he said she would never stop smiling.

“She was just so brave, a warrior” Mr Lewis said.

A struggling regional health care system

Emerara’s parents believe Queensland’s regional health care system is under-resourced and not adequately equipped to deal with specialised diagnoses like their daughter’s.

“We have a few family friends who are doctors, who said this is just how it is,” Mr Lewis said.

“All the best doctors are sent to the cities because that’s where they will be able to cure more people and save more lives.”

Emerara’s parents believe the regional health system is under-resourced. Picture: Supplied

Mr Lewis said he had met countless families at the oncology ward in Hervey Bay who had experienced similar misdiagnoses.

“The thing is, they need more training and more specialist doctors to be able to spot a problem before it’s too late,” he said.

His advice to other parents

Mr Lewis said too many months went by where Emerara’s pain and her mother’s insistence that something was wrong were ignored by healthcare staff.

“I think people get intimidated by the health system,” he said.

“You know your child better than anyone and you have to push to make sure their pain is treated seriously.

A fundraising event will be held in Brisbane this Saturday. Picture: Supplied

“We need to start listening to parents and there needs to be more done.”

A Go Fund Me has already raised more than $24,000 to help Emerara’s family cover the costs of her medical care and funeral.

The family is moving ahead with a fundraising event this Saturday, which was originally scheduled to help cover the costs of Emerara’s ongoing treatment and making her final days more comfortable.

“I wanted to be able to tell her, anything you want to do, yes, we can go and do it,” Mr Lewis said.