A mother has issued a heartbreaking plea as she battles to save her young son from a devastating neurodegenerative disease that is slowly stealing his future.
Emma Jobsis is the mother of two young boys, four-year-old Cade and one-year-old Cosmo.
But while Cosmo is hitting the typical toddler milestones, Cade’s journey has been anything but ordinary.
Cade suffers from SPG50 (Spastic Paraplegia 50), an ultra-rare genetic disorder that causes progressive damage to the nervous system.
The diagnosis has turned Emma’s life upside down, and she is now in a desperate race to raise funds for a pioneering treatment that could change everything.
She said: “It’s a race against time, and the window is closing.
“Cade has a rare neurodegenerative disorder called SPG50. It’s genetic, and while he was born with it, the signs took time to emerge.
“He can’t speak, and he relies on a walker to get around. His motor skills are delayed, and everything from eating to playing takes extra effort. But he tries, every single day.”
Emma told how SPG50 is so rare that most people have never heard of it. But for families like Emma’s, the name is etched into every moment of their day.
The mum explained that her son has been robbed of experiences that other children his age would typically thrive in, with the biggest factor being his ability to walk.
Emma managed to capture on camera the sweet moment younger son, Cosmo, learnt to walk alongside Cade, who was trying to learn himself.
She told how proud she was of Cade for taking the steps unaided, making it one of the most emotional days of her life.
Emma explained that without treatment, her son’s ability to walk could be lost all together, with his battle for independence quickly declining.
The Jobsis family has already raised $1.7 million to fund an experimental gene therapy designed to stop the disease in its tracks.
But they need a total of $3 million to treat all eight children eligible for the trial.
The online community has played a powerful role in the campaign, with thousands sharing the family’s story and donating to their cause.
She said: “This isn’t just about Cade, it’s about every child facing a diagnosis that most people have never heard of.
“We’re doing everything in our power, but we can’t do it alone. Time is not on our side. We need help now.
“People have rallied around us, donated, shared our story, and shown us compassion, it’s humbling, and it reminds me we’re not alone, even when the days feel impossibly heavy.”
She added: “Without treatment, the outlook is heartbreaking. Cade will likely lose the abilities he’s worked so hard to gain. Over time, he could lose the ability to walk altogether.
“His mobility, independence, and quality of life will continue to decline. There’s a chance he could end up in a wheelchair full-time, reliant on others for everything, even basic needs. And that’s if we don’t get him into treatment soon.
“It felt like the floor dropped out from under us. I was scared, overwhelmed, and grieving the future I thought he’d have.
“There’s no guidebook for this, you just suddenly find yourself in a world of medical terms, uncertainty, and fear. But eventually, the heartbreak turned into purpose. I knew I had to fight for him.”
Cade had finally taken some independent steps without his walker – a moment the family weren’t sure would ever come.
Emma explained: “To see that happen around the same time Cosmo was learning to walk, it was incredibly special and bittersweet.
“Cade had to fight so hard for those steps. While other kids his age were running around, he was taking cautious, determined steps that meant the world to us.”