Heartbreaking news from North Wales as baby Rupert Smith battles an ultra-rare neurological disorder. At just two weeks old, Rupert’s parents noticed his eyes flickering in odd patterns—a sign of Alternating Hemiplegia of Childhood (AHC), a one-in-a-million condition. Despite extensive tests returning normal results, his little body faces sudden paralysis, seizures, and emergencies. Now, Rupert requires 24/7 care and his family is tirelessly fundraising £1.5m for a potential trip to the US for treatment and research.
Rupert, who turns one on 28th May, has already been through more than most face in a lifetime. A recent worsening of symptoms had his mum Siobhan performing CPR in a supermarket aisle. So far, £285,000 has been raised, but the family continues their mission to secure the funds necessary for treatment abroad and to support groundbreaking research.
Rupert’s two older brothers, George and Henry, bring joy and resilience to his life. On Rupert’s birthday, landmarks worldwide will illuminate with “Rupert’s Rainbow” to spread awareness about AHC.
His parents, Siobhan and David, are determined to give Rupert the best chance at life despite the uncertainties and stress that AHC brings. They hold hope in emerging therapies, including Antisense Oligonucleotide (ASO) therapy and genome editing, which show true promise for treating this disorder.
Rupert’s story is one of love, resilience, and hope. The community’s overwhelming support is a testament to the impact this little boy has had on everyone he meets. Please consider supporting this brave family in their fight—every contribution helps in their quest for treatment and a cure. Together, we can make a difference for Rupert and raise awareness of AHC.
Join the movement to help Rupert by supporting his fundraiser and spreading the word. Let’s light up our hearts with “Rupert’s Rainbow” and show that no battle is fought alone. 🌈❤️ #RupertStrong #AHCAwareness #RupertRainbow