Ipswich boy’s battle with Neurofibromatosis after a tumour the size of a lemon removed from brain

Before the age of seven, bubbly James Selwyn-Smith had already had five major surgeries. A little over a year ago he had a tumour the size of a lemon removed from his brain

James Selwyn-Smith with dad Anthony Selwyn-Smith and mum Amanda McFarlane at their home in Brassall.

FOR a little boy who has already gone through so much in his young life, it’s hard to find James Selwyn-Smith without a smile on his face.

Like many other kids his age he’s obsessed with Marvel superheroes and playing Lego.

But before the age of seven he had already had five major surgeries and that was before his family knew he would be battling a medical condition they had never heard of for the rest of his life.

A little over a year ago he had a tumour the size of a lemon removed from his brain.

James Selwyn-Smith had a tumour the size of a lemon removed from his brain last year.

After countless doctor visits over a year-and-a-half to work out what was behind a small but growing lump on the inside of his foot, it was finally determined that James had Neurofibromatosis type one.

The lump, which would end up being a benign tumour called a neurofibroma, was removed but James soon started complaining about bad headaches and eye strains.

The family was referred to an ophthalmologist at the Queensland Children’s Hospital to look at his eyes and James was quickly sent for an MRI.

While in hospital a doctor noticed his many large café-au-lait marks, which look like brown birthmarks, and for the first time his parents Anthony and Amanda heard the word Neurofibromatosis.

James was diagnosed with NF1 but as his family were still digesting the news, they received a shocking call.

The scan had revealed the presence of a brain tumour in his right parietal lobe and it would need to be removed immediately.

He was booked in for surgery on March 17 last year, right as the COVID-19 pandemic was starting to grip the country, and days before Queensland went into its first major lockdown.

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“Tony and I learnt just how long we could hold our breath for which was approximately four-and-a-half hours,” Amanda said.

“No one knows anything about this virus and they’re about to open our son’s skull.

“It was a 100 per cent gross total resection so he didn’t need an chemo or radium or anything. He was discharged four days later.”

While they were incredibly relieved at the outcome of the surgery, Amanda and Anthony have had to play a tense “watch and wait” game ever since.

NF is a set of three complex genetic conditions that cause tumours to form on nerve cells throughout the body.

Affecting one in every 2500 people in Australia, NF1 is the most common of the three and was previously known as Von Recklinghausen Disease.

It is characterised by café-au-lait marks, freckling in the groin and armpits and neurofibromas and it has no cure.

The majority of people with NF1 will never be impacted by major medical complications but for others it can be severe, debilitating, and life-threatening.

The nine-year-old Ipswich boy loves Marvel superheroes and Lego.

James sees 11 specialists at the QCH and while he has a severe motor speech disorder, ADHD, a mild intellectual disability and some learning difficulties, he lives life to the fullest and loves riding his bike, camping and kayaking with his parents, brother and sister.

Trips to the hospital are just a regular part of the routine.

“He’s a bit of a clumsy kid,” Amanda said.

“He’s always tripping over and we just thought he’s just one of those kids.

“But the right parietal lobe controls all of your movement. It turns out his brain tumour was pressing on the centre of the brain that controls his movement and his sensory processing.

“His sensory processing mega centre was being squished so everything was heightened for him.”

James has a very high pain tolerance and is sensitive to light and sound.

The nine-year-old also has what’s called alien hand syndrome, which sees one hand mimic the other hand involuntarily.

He could be holding a cup in one hand and turn a door handle with the other, causing him to spill a drink all over himself.

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An MRI is needed every three months to check on the tumours in his body.

He has a couple on his spine, several in between his ribs and a small unidentified bright spot in the centre of his brain.

“With the nature of it we can’t just go in and take them all out because it will cause damage to his body,” Amanda said.

“We can’t open him up every time we find something or the kid is always going to be in hospital.

“The MRI will tell us if anything has changed or anything is growing and pushing on something it shouldn’t.

“The tumour in his brain is benign. Others in his body, there’s a 50 per cent chance they could be cancerous. On the other hand he’s a nine-year-old and he’s such a happy rambunctious little boy. You’ve still got to let him live his life.

“We’re not keeping him inside wrapped up in cotton wool.”

May is Neurofibromatosis Awareness Month, which this year is aiming to bring the condition “out of the shadows”, with World NF Awareness Day falling on May 17.

Amanda and Anthony are passionate and dedicated advocates but said they had never heard of the condition before James was diagnosed and it was a similar story for friends and family.

The Brassall family is passionate about raising awareness about Neurofibromatosis.

There are dedicated NF clinics in Sydney and Melbourne but none in Queensland.

The Children’s Tumour Foundation has been given a significant boost of $7 million from the federal government for research into NF, as well as an extra $1 million to support the ongoing work of the organisation.

“We saw so many people at Ipswich Hospital - and I don’t fault them at all they’re fantastic - there’s just not enough knowledge,” Amanda said.

“So many people saw it and didn’t pick it up. If it was picked up earlier could the brain tumour have been taken out earlier?

“We don’t know how long he had the tumour for.

“We don’t know how much his learning disability or intellectual disability, even his speech disorder, is due to the brain tumour or NF.

“We’d love to see a dedicated NF clinic at the (QCH).”

Anthony said even if James could sometimes get frustrated due to other kids sometimes not understanding what he is trying to say, his strength was something to be admired.

Fresh from celebrating his birthday last month, the Ipswich West State School student is a popular figure in the Starlight Express Room, which he loves to visit after appointments at the QCH.

His dad said he has made friends with just about everyone in his path.

“He’s such a resilient, happy, bubbly, friendly, empathetic little kid,” Anthony said.

“Nothing gets him down.

“He’s an over-hugger.”

Anthony said the neurofibromas could essentially lay dormant for the rest of his son’s life but there was nothing they could do but wait for each quarterly scan.

“We’re scared for when the naivety wears off (when he gets older),” he said.

Visit here for more information about NF.

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Originally published as Ipswich boy’s battle with Neurofibromatosis after a tumour the size of a lemon removed from brain