In North Wales, the lives of David and Siobhan Smith have taken a challenging turn since the birth of their son, Rupert, in May 2025. Born seemingly healthy with only minor breathing issues, the couple soon found themselves grappling with an alarming series of medical mysteries and a distressing diagnosis. After enduring months of unexplainable seizures and life-threatening episodes, Rupert was diagnosed with alternating hemiplegia of childhood (AHC), a rare neurological disorder, in January 2026.
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Rupert’s health issues surfaced just weeks after his birth. Siobhan, 36, recalled noticing peculiar eye movements in her infant son. “At about two weeks old we noticed his eyes were flickering side to side, up and down, then they’d lock to one side,” she explained. This triggered tests for neuroblastoma, but the results were negative. Over time, more troubling symptoms emerged, including episodes where Rupert’s body would become rigid, leading doctors to suspect epilepsy, yet further tests yielded normal results.
The situation escalated when Rupert was six months old; he endured a near-fatal episode, prompting Siobhan to perform CPR to save him. Following extensive genetic testing, the diagnosis of AHC revealed that Rupert suffers from a gene mutation, resulting in episodes of weakness or paralysis. The disorder is unpredictable and can be triggered by factors as diverse as environmental changes, bright lights, or emotional stimuli. Unfortunately, there is currently no established treatment or cure for AHC.
Siobhan articulated the constant anxiety that surrounds their day-to-day life. “We’re on edge all the time. You can’t take your eyes off him at all. It’s very unpredictable,” she remarked, highlighting how quickly the situation can deteriorate from a joyful moment to a medical emergency. This vigilance comes in light of Rupert having already experienced two major episodes by the time he reached 11 months old.
Managing Rupert’s condition requires comprehensive and constant care. He is under the supervision of multiple departments, including neurology, respiratory, and physiotherapy, spread across two hospitals. “This last set of seizures—over 48 hours he probably had 12—was triggered we think by teething. Something as little as that can cause a significant event,” Siobhan said. The family is always prepared with oxygen and emergency medications on hand, highlighting the precarious nature of Rupert’s everyday life.
“They can’t allow him to be too excited, too upset, or too happy, as any of those emotional shifts could trigger an episode,” added David, 40. This paradox of managing joy and caution has been particularly difficult for the parents, yet Rupert’s spirited nature continues to shine through. “He’s still so smiley and so determined,” Siobhan remarked, reflecting on her son’s resilience.
As Rupert’s first birthday approaches, the Smiths are actively seeking potential treatments in the United States. They have already raised over $350,000 to support medical travel and research into AHC. Siobhan stressed the urgency of their situation, stating, “Time is critical. We’re hoping treatment comes through in 12 months, and a cure hopefully in a couple of years.”
The significant support from their community speaks volumes about Rupert’s impact on those around him. “He’s beautiful, and everyone who meets him falls in love with him,” David shared. The outpouring of generosity and aid has not only provided financial relief but has also instilled hope in the family as they navigate an uncertain medical landscape.
Ultimately, the Smiths are committed to doing everything within their power for their son. “There’s only so much you can take; he’s had to deal with more than most people do in their life, and he’s not even one yet,” David remarked, encapsulating the weight of their experience. The journey ahead is fraught with challenges, but with their unwavering love and community support, the Smiths are determined to advocate for Rupert’s health and well-being.