Family of six-month-old boy Louis learn he has rare syndrome after brain tumour removed


The parents of a six-month-old boy have described their son as “brave” as he battles a rare syndrome that will see him develop another cancer in his childhood.

Doctors made the discovery after the Royal Flying Doctor Service rushed the boy and his mum Justine Boylen to Perth Children’s Hospital from Western Australia’s northwest.

Louis the Brave, as his family now call him, was initially taken to Geraldton Hospital with gastro symptoms.

But when fluid built up on his brain, his mum pushed for doctors to perform a CT scan.

While the scan confirmed the baby had fluid build-up, doctors also discovered a brain tumour.

Louis’ father and brother Charles, 2, drove four hours to Perth to be with Louis and his mum as the family waited four days for an operation to remove the tumour.

Doctors were able to successfully remove the tumour during a nine-hour operation but tests revealed it was a grade three choroid plexus carcinoma, a rare and aggressive type of cancer that was last seen in Perth 10 years ago.

A final diagnosis confirmed Louis had Li-Fraumeni Syndrome, a rare mutation of the cancer suppressing gene TP53.

People with the syndrome are more at risk of developing rare types of cancers, particularly young children, which means there is a 100 per cent chance that six-month-old Louis will develop another type of cancer in his childhood.

There are three published trials on the Li-Fraumeni Syndrome that include children.

One study showed two out of four children survived to ages five and eight before they developed another cancer.

Another study showed one out of three children survived and was battling bone cancer.

The third study found there was no chance of survival.

The news has devastated the family and they were given options for Louis to undergo “mega chemotherapy,” involving stem cell rescue after bone marrow was depleted, or palliative care.

“Life truly is so very precious,” Ms Boylen wrote on a GoFundMe page for the family.

“All you hold near and dear can be torn await in an instant.

“Looking back on the first 4.5 months we had together as a family since Louis was born were pure bliss, ignorance is bliss.”

Louis’ parents decided to give him a fighting chance and have started mega chemotherapy.

Over the next nine months, he will receive the most intense dose of chemotherapy a baby can be given.

If the cancer returns, there is nothing more doctors will be able to do.

The family are facing many unknowns in the coming months, but know their precious boy is brave, a fighter and loved.

“He is thriving now and has been so resilient, he is a true champion, but he has also begun his biggest battle for survival,” they said.

Louis’ aunties have setup a GoFundMe page for the family to help pay for medical and living expenses while the young boy receives treatment in Perth.

More than $45,000 has been raised so far.

“Sending you all lots of love and praying for miracles,” one person commented alongside their donation.

Another person wrote: “Hoping that a miracle is in store for gorgeous baby Louis … thinking of all of you.”