A devastated family are racing against time to save their three-year-old son as they fork out more than £4,500 a month battling a cruel condition that could rob him of his ability to walk, talk and eat.
Little Gurmoh Gill is a happy toddler who loves dancing to Baby Shark and dreams of becoming a firefighter.
But the toddler has been diagnosed with an extremely rare and progressive neurodegenerative disease called Spastic Paraplegia (SP).
The condition damages the nerves responsible for movement and cognition, leading to painful muscle stiffness and, over time, paralysis.
Now his parents, Navpreet Gill and Stalinjeet Gill, are desperately trying to raise funds for life-changing gene therapy before it’s too late.
“It is devastating – the worst thing that has ever happened to us,” Navpreet, from Surrey, Canada, told Need To Know.
“Imagine getting a diagnosis where you know there is no treatment available and it will keep getting worse and will eventually take away all of his abilities.”
Gurmoh’s problems first appeared at just 18 months old when he was unable to stand on his own.
Although he later learned to walk, his progress stalled.
The youngster, who attends preschool and loves making friends, now struggles with balance and movement.
Doctors have since confirmed his condition is progressive, meaning he will gradually lose the ability to walk, use his arms, speak and eat.
It will even affect his mental capacity.
Navpreet described the moment of diagnosis as overwhelming.
She said: “There was a strange split inside me.
“One part was trying to stay present so I was nodding, listening and asking questions.
“The other part was already grieving – grieving things that hadn’t happened yet, milestones that now felt fragile or out of reach.
“It was a quiet kind of grief, but deep and steady, like something settling into my bones.
“And yet, underneath the fear, there was something else too – a fierce, instinctive resolve that doesn’t announce itself loudly, but quietly decides, ‘I will be there for him and make sure I do everything possible for him.’”
Gurmoh doesn’t understand his condition and spends his days playing with his toy fire engine and singing along to Wheels on the Bus.
But for his parents, every day now feels like a race against time.
Navpreet said: “It often creates a constant sense of urgency, like time matters more than it used to, and that can feel heavy.
“The future can seem less certain or harder to picture, which brings worry and grief.
“At the same time, many families find it shifts their focus toward the present, causing them to value time together more deeply and prioritise what truly matters day to day.”
The family are currently spending around £4,700 a month on treatments, including physiotherapy, occupational therapy and speech sessions.
Gurmoh also undergoes intensive therapy programmes lasting several weeks at a time.
His parents say acting fast is crucial to protect the abilities he still has.
Navpreet said: “He hasn’t lost an ability completely but his walking gait has declined, that’s why we are in a bad place.
“We need to get therapy for him within a certain time so he doesn’t lose his abilities.”
Now they hope gene therapy could change everything.
Navpreet added: “It would likely feel like a turning point, bringing relief, hope, and finally having something concrete to hold onto after a lot of uncertainty.
“Instead of just racing against time, there’d be a sense of moving toward something that could help him.“
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