Two-year-old son of Labor MLA Natasha Fyles diagnosed with rare spinal cord tumour

DARWIN toddler Henry Archbold has been diagnosed with a spinal cord tumour so rare that there are no other cases worldwide in a child so young.

Natasha Fyles, with husband Paul Archbold, and sons Oliver, 4, and Henry, 2. Picture: JUS

DARWIN toddler Henry Archbold has been diagnosed with a spinal cord tumour so rare that there are no other cases worldwide in a child so young.

In fact, Australia has not seen any cases at all in children under the age of 10 and very few adults have ever been diagnosed.

It is the rarity of the tumour’s precarious position that has prompted Henry’s Nightcliff parents Paul Archbold and Natasha Fyles to leave for America tomorrow to seek specialist medical advice for their two-year-old.

Ms Fyles told the NT News that Henry, 2, was diagnosed with an Intramedullary Spinal Cord Glioma/Astrocytoma Tumor in the cervical region when he was aged just one following an MRI scan at Royal Darwin Hospital.

“We first noticed Henry kept clenching his fist when he was about six weeks old, so I mentioned it to the child health nurse on one of the home visits,” said Ms Fyles, the Labor member for Nightcliff.

“She referred us to the child development team and a paediatrician at RDH who then engaged a visiting neurologist. It was then decided Henry would have an MRI scan just before his first birthday.”

This scan revealed a small tumour at the base of his spine. Further complicating matters was that the tumour was inside Henry’s spinal cord and pushing on his nerve. Because of its location doctors were unable to perform a biopsy to determine if it was benign however all indications are that it is non-cancerous.

“Doctors were just alarmed. It is so rare that there is no record of any child under 10 being diagnosed. Children can have symptoms for years, and many years can be spent searching for the problem as children’s symptoms get worse. We are fortunate that we were able to find the problem earlier.

“And you really couldn’t tell looking at Henry. He has only slight loss of motor function in his left arm and is a normal happy two-year-old.”

Natasha Fyles, with husband Paul Archbold (left) and sons Henry, 2, and Oliver, 4.

Ms Fyles and Mr Archbold have spent the past year engaging specialists both in Darwin and Sydney who have been monitoring the tumour.

However a recent MRI scan found the tumour had grown, and is likely to continue getting bigger as Henry develops.

“We want to do absolutely everything we can for Henry and after months of research — and on recommendations from doctors here in Australia — we decided to take him to Washington to get further advice and possibly treatment.

“Doctors have been great here monitoring the tumour but now that it has started to grow we need to see specialists who have dealt with this before.”

Ms Fyles, who is also flying her parents over to help care for Henry’s four-year-old brother Oliver, said they would visit five medical specialists just outside Washington to help decide the best course of action for the condition.

“Doctors in America see between 100-200 cases like this a year, which is still a relatively small number for their population. It looks like he will need surgical intervention, and because it is on his spinal cord it is obviously high risk.

“There are just so many variabilities because of its location, but we are hoping doctors in Washington who have seen cases like this before will be able to guide the next step from here.”

The family fly out to the US tomorrow for three weeks.