'This will most likely kill him': Boy, 8, diagnosed with rare disease after losing eyesight

Josh Dutton
News Reporter

A West Australian mum said her son complained of losing his vision before he was diagnosed with a rare and potentially fatal disease.

Mum Christina Thomas, from Secret Harbour – south of Perth, told Yahoo News Australia her eight-year-old son, Theo, first had trouble seeing in November while doing motocross.

“Theo pulled into the pit area and said he was having trouble seeing because of a ‘smudge’,” she said.

“I told him to clean his goggles. He then went out to continue riding.”

Theo kept racing but missed the chequered flag and did another lap. This continued a few times that afternoon.

Theo Thomas, 8, has a rare illness which affects the nervous system. Source: Supplied

‘Theo can’t see’

On the following Monday, Ms Thomas received a phone call from her son’s school.

“They told me, ‘Theo can’t see’,” she said, adding Theo had been sitting at the front of the classroom.

“He was a metre away from the whiteboard.”

The boy was taken to an optometrist who noted vision loss in both eyes. He was rushed to Perth Children’s Hospital in the days that followed.

Theo had lost 100 per cent of the vision in his right eye and things only got worse.

The Secret Harbour boy was diagnosed with neuromyelitis optica in December. It’s widely considered to be a similar illness to multiple sclerosis with no cure.

According to MS Australia, neuromyelitis optica, also known as NMO or Devic’s syndrome, involves the inflammation and destruction of optic nerves.

Patients with NMO have antibodies which mistakenly attack the nervous system.

The boy's receiving ongoing treatment but has some paralysis in his right arm and issues with his sight. Source: Supplied

NMO also affects the spinal cord and can leave patients paralysed.

Theo’s condition is rare too.

A study published in the Journal of Neurology, Neurosurgery and Psychiatry in 2017 found just 193 cases of NMO recorded in Australia and New Zealand.

Adding to the rarity of Theo’s diagnosis, NMO is found to be more common in women, with females six times more likely to be affected by it than males.

‘This will most likely kill him’

Ms Thomas said her boy was in “really good spirits” and never complained.

“He never says he’s in pain,” she said.

“He just stands an inch away from the TV to play Minecraft.”

When asked about Theo’s future, his mum said she was unsure how long he would survive.

“I know this will most likely kill him,” she said.

“It’s just a matter of time. I’ve been crying so much. I’m surprised I have any water left.”

Theo’s condition is a matter of two steps forward and one backwards.

Earlier this week, the boy was told by doctors he’d regained 50 per cent of his vision, but he had a lumbar puncture.

He also has permanent damage to his retinal nerves and currently is suffering some paralysis in his right arm.

Theo's mum said he's suffered permanent retinal damage. Source: Supplied

Theo can still walk. He’s stopped motocross for a while, but the plan is for him to be back riding shortly after doctors gave him the green light.

He will also be back in the classroom.

“He’s very shy and quietly spoken,” Ms Thomas said.

“But he’s determined in what he does.”

Ms Thomas has started a GoFundMe page to help her family as Theo undergoes ongoing medical treatment.

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