James' fight against time

1 October 2023 | Expected time to read: 3 minutes

At only seven years old, James the fighter has overcome more significant health challenges than others will experience in a lifetime. It’s hard to believe that at just three, the once active young boy who loved daycare and spending weekends at the park, was diagnosed with a rare condition that could have led to paralysis.

(Image: On the left, James wears harnessing gear and points up to the sky. On the right, James rides a bike on the footpath).

Like most kids at daycare, James was no stranger to contracting the latest bug and nasty germs that were flying around. So, when he started feeling unwell, his mum Yvonne suspected he had the flu and kept him home to keep a close eye on him. It’s then she noticed a decline in James’ walking, and within 10 days, he was completely unable to walk independently.

Looking back, Yvonne explains “One afternoon James had trouble walking, which was very strange because he’s always so active and energetic. He just wasn’t himself and as days went by, I knew something was very wrong,”

When Yvonne walked through the doors of the Emergency Department at The Children’s Hospital at Westmead, she never expected they would leave just over a week later with a life-changing diagnosis. If it wasn’t for the Hospital’s extraordinary clinicians and the bright minds of The Kids Neuroscience Centre, James’ life may look very different today.

Within hours of being admitted, the Kids Neuroscience Centre ordered a series of tests and MRI scans to identify the cause. Yvonne says, “At that point I was extremely anxious and desperate. I didn't even sleep during that night because I was very worried that if I closed my eyes, I would wake up and see him getting worse and worse. I would rather open my eyes and see evidence that, "Oh, he's still awake" or he's still doing fine.” 

James’ MRI identified that he did, indeed, have an inflamed spinal cord which if left untreated, can cause many different health complications, such as paralysis from motor and sensory loss, and loss of bladder and bowel control. But to find the underlying cause of this inflammation and to identify an effective treatment, he had to undergo another test that was recently developed by the Hospital’s Brain Autoimmunity group and led by researcher Associate Professor Fabienne Brilot-Turville.

(Image: Associate Professor Fabienne Brilot-Turville smiles, standing in the hospital hallway).

It’s thanks to this cutting-edge research and bench to bedside approach, that James’ clinicians were able to identify and treat the cause of the inflammation with the right type of medication at a crucial time. In James’ case, the tests confirmed he has an autoimmune disease which causes a protein in his brain to attack nerves and muscles in his body like his spinal cord.

If doctors were unable to deliver a diagnosis when they did, it is likely James would be living with a permanent disability today.  Thankfully, only days after James received his medication, he was able to walk again, which soon progressed into running!

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In FY22, Sydney Children’s Hospitals Foundation (SCHF) proudly contributed $13.8 million towards child health research across Sydney Children’s Hospitals Network (SCHN), supporting 80 positions, 3 PHD scholarships and 11 projects thanks to the generosity of our Movement of Many.

SCHF is now currently seeking funding for a project called NeuroRUNWAY that will help enhance care for children across SCHN like James, who present with neurological symptoms.

(Image: James smiles at the camera wearing a Santa hat).

No child should ever have to go through this, but those who do deserve our all. To help give sick kids the brightest Christmas possible and support vital programs like NeuroRUNWAY donate today.

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