An Australian mother says she is prepared to “do anything”, even sell her kidneys, to raise $80,000 to take her son to China so Professor Charlie Teo can operate on her son.
“I am prepared to do anything to make this happen for Riley … the kids laughed at me when I wanted to look into selling my kidneys … that is just the lengths I will go to,” Beck Bierton told news.com.au.
“Professor Teo is the only person in the world willing to try to save my son’s life. As a parent, I cannot accept watching this tumour continue to grow when there is someone willing and able to remove it.”
Riley, 21, has lived with a life-threatening brain stem tumour for 20 years. Initially diagnosed with what doctors believed was an inoperable diffuse brain stem tumour, his family was told to prepare for the worst.
“We were given six months with our beautiful little boy,” Bierton said.
“He underwent chemotherapy, which thankfully slowed the tumour’s growth, but we lived for years under the shadow of a diagnosis that said there was no hope. We were told nothing more could be done.”
What was once expected to be six months became a year, then 10, then 15, until at 17 the tumour began progressing again and Riley underwent a further round of chemotherapy.
“That’s when something became very clear. This was never the aggressive, malignant tumour we were told it was,” Bierton said.
“Today, my son is 21 years old. He is here. He is alive. He is strong. And we now know the original diagnosis was likely wrong. The tumour is progressing again, and this time we refused to accept the same answer.”
Bierton said she first became aware of Professor Teo after seeing a news report about him operating on similar tumours.
“For the first time since Riley’s diagnosis I had hope like never before. I told my family, ‘Charlie will be the one who saves my boy’.
“Although I was shut down on that idea from the hospital, Charlie has never left my heart and hopes.”
Because of the tumour’s location in the brain stem, the surgery is highly complex.
Restrictions on Professor Teo’s medical registration in Australia mean Riley would need to travel to China for the procedure.
The $80,000 needed would cover hospital and surgical fees, specialist medical team costs, flights and accommodation overseas. The family must raise the funds by March 1.
Professor Teo believes the tumour is a benign JPA (juvenile pilocytic astrocytoma), which can potentially be removed completely.
“He has been incredibly honest about the risks,” Bierton said.
“Brain stem surgery is delicate and complex. But for the first time in 20 years, there is a real chance, not to slow it, not to manage it, but to remove it. And we cannot ignore that chance.”
Riley said the tumour is never far from his thoughts.
“Not many people would be able to tell I had a brain tumour as I never allowed it to limit me and hold me back,” he said.
“Mum shared a story with me of when I first went on chemotherapy at 20 months. It was only weeks into it when she was finding me constantly hospitalised on the verge of death with all the side effects of the chemo. The doctors told my mum to basically wrap me in bubble wrap as I had no immunity.
“I was in my pram. It has been raining and my sister and brother were running in the rain, sliding in mud having the times of their lives. I was latched in my pram pulling at my straps crying to let me out so I could play with my siblings.
“In a split second my mum made a life-altering choice to unstrap me out of the pram and let me go play in the mud with my siblings.
“I believe this split decision has had a crucial impact on my life. From that moment on I was going to live and nothing was going to stop me.”
Professor Teo has said he believes Riley’s tumour “is and always was benign, surgically resectable and curable, if it was done when he was a baby”.
He has formally requested the Medical Council of NSW lift conditions on his registration, which require written support from an approved neurosurgeon for certain complex brain surgeries.
The restrictions stem from findings by the Health Care Complaints Commission regarding two past cases.
Since the conditions were imposed, Professor Teo has performed 236 surgeries abroad under supervision, reporting excellent results for 202 patients and good outcomes for 28.
The Medical Council of NSW says it cannot comment on ongoing matters and publishes decisions on the national Register of Practitioners.
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