The mother of a teenage girl who tragically died of a rare cancer that has affected much of her family has shared more devastating news.
Amelia “Milli” Lucas died a month after her 14th birthday on January 4, 2021, after a brave battle against a terminal genetic cancer.
She had been diagnosed with a Grade VI Glioblastoma at the age of nine and given only 12 weeks to live, but survived another five years after being operated on twice by controversial neurosurgeon Charlie Teo.
Now, Milli’s mother, Monica Smirk has revealed she is battling terminal cancer in the form of inoperable tumours on her back, the West Australian reports.
The Perth woman’s family has a rare gene disposition called Li-Fraumeni syndrome, which has now killed her mother, brother, daughter, niece and nephew.
Fewer than 1,000 people globally suffer from the syndrome, which increase the risk of several cancers for a lifetime.
Ms Smirk told the West Australian Sunday Times she discovered the lumps on her back while looking after Milli in 2021, but was too upset to get a biopsy.
Once doctors found fluid in her lungs, they stopped her treatment. She said she may have further treatment options after further scans later this year.
In yet another tragic update, Ms Smirk told the newspaper her 19-year-old daughter Tess is awaiting the results of a concerning annual scan.
Tess — who also has Li-Fraumeni syndrome and was left legally blind after being diagnosed with a brain tumour in 2016 — is training to become a professional dancer.
As the family comes to terms with more devastating health news, the community is rallying behind them.
The Millstar Foundation, which the family started to honour their “angel” Milli in the effort to provide alternative therapies for WA patients, have collected more than $13,000 worth of prizes for a raffle as “Monica fights for her life”.
Milli became known as Dr Teo’s “miracle girl” in 2019 after the divisive surgeon successfully removed 98 per cent of a brain tumour that had been dubbed inoperable and incurable by other surgeons.
But just last week, he was reprimanded by the NSW Medical Board after being found guilty of unsatisfactory professional conduct over two “catastrophic” surgeries he did in 2018 and 2019.
The medical professional standards committee found he chose to operate on two patients “where the risk of surgery outweighed any potential benefits of the surgery”.
It found he did not obtain informed consent from the patients prior to surgery, and charged an inappropriate fee of $35,000 to one patient.
His new conditions require him to obtain written permission from a Medical Council-approved neurosurgeon to perform the most risky surgeries.
The measures are similar to ones imposed on the surgeon in August 2021 over a separate investigation into alleged misconduct.
In September last year, Ms Smirk told news.com.au she feels “devastated” and “disappointed” for patients and their families who no longer have access to potentially lifesaving surgery.
She said the rules which limited Dr Teo’s operating ability “robbed” the “medical industry” and future research.
“Nothing was ever going to save Milli,” Ms Smirk said.
“We all knew that but he gave us an extra few years – she wouldn’t have had that and we wouldn’t have had that without him.”
Those who wish to contribute to the raffle can visit The Millstar Foundation Incorporate Facebook group.
— With Jessica Wang