After nearly a decade of uncontrolled seizures and repeatedly being told their child’s brain scans were “normal”, Matthew and Jenny Sanan have launched a BackaBuddy crowdfunding campaign to fund Project Unseen, a South African research initiative exploring how artificial intelligence (AI) could help detect hidden causes of drug-resistant epilepsy.
The campaign follows a major breakthrough in their son Declan’s medical journey, after experimental AI technology identified a subtle brain abnormality that had gone undetected in multiple MRI scans over 10 years.
Declan, who will turn 12 in May, began experiencing seizures at just two years old. Despite extensive medical care, genetic testing and seven MRI scans, doctors were unable to identify the cause of his condition.
“When your child is still seizing, sometimes dozens of times a day, ‘normal’ doesn’t mean healthy,” Matthew says. “It just means we don’t know what’s wrong.”
A decade of unanswered questions
For the Sanan family, the absence of visible findings became one of the hardest realities to live with. Each seizure raised fears about long-term neurological damage, yet scan after scan produced the same result.
“You live with this constant, quiet desperation,” the couple explains. “You’re always hoping the next doctor might see something the others missed.”
Matthew says the word “normal” became a barrier rather than a reassurance.
“Finding something, even something serious, would have given us hope,” he says. “It would have meant there was a target. A direction. Instead, we were left waiting in the dark.”
A late-night search and a turning point
That darkness began to lift during a late-night online search, when Matthew typed four words into a search engine: AI in epilepsy.
The search led him to the MELD Project, an experimental international research initiative using artificial intelligence to detect focal cortical dysplasia (FCD), a leading cause of drug-resistant epilepsy that is often invisible on standard MRI scans.
Matthew submitted Declan’s scans, which had previously been described as “perfect”. The initial feedback showed only a low-confidence signal. Before disengaging, Matthew mentioned that Declan had undergone seven MRIs over his lifetime and asked whether all of them could be reviewed.
Weeks later, the results changed everything.
The same hidden signal appeared consistently in five of the seven scans. When the images were later shared, without AI guidance, with a world-renowned epilepsy specialist, the expert independently identified the same abnormality.
“For the first time in ten years, someone could actually see it,” Matthew says. “That was the moment everything shifted.”
From personal breakthrough to public mission
The discovery brought long-awaited clarity for Declan’s care and opened the door to treatment planning. But for Matthew, it also raised a larger question.
“If this technology could find something that had been missed for a decade,” he says, “how many other children are still being told their scans are normal when they’re not?”
That question became the foundation of Project Unseen, a locally driven initiative aimed at giving South African doctors and researchers access to advanced AI-supported research tools capable of flagging subtle neurological abnormalities earlier.
Using his background in technology, Matthew began developing a high-performance research system designed to analyse complex 3D brain data, offering clinicians an additional layer of insight beyond standard imaging.
“This isn’t a finished diagnostic tool yet,” he explains. “Right now, I’m building the engine.”
Community-funded science
Rather than pursuing private funding or keeping the work overseas, Matthew chose to involve the public through crowdfunding, ensuring the technology would remain accessible and community-focused.
The response exceeded expectations. The BackaBuddy campaign surpassed its initial target, raising more than R210 000 from donors across South Africa.
All funds raised will be paid directly to the equipment supplier, and the hardware will be used as a shared research resource to support medical professionals and non-profit partners as capacity allows.
“This is about shortening the waiting time,” Matthew says. “Families shouldn’t have to wait 10 years for answers.”
For parents still searching for answers, Matthew and Jenny offer simple advice.
“Trust your instincts,” they say. “If you feel there’s more going on, don’t stop looking. Technology is moving fast, and there is always hope.”
Find out more about the BackaBuddy crowdfunding campaign here.