David and Siobhan Smith and their eight-month-old son Rupert, who is fighting the ultra-rare condition Alternating Hemiplegia of Childhood.
On Monday night Everton’s new stadium will light up to support the cause of Rupert Smith, an eight-month old baby from North Wales who is battling a one in one million condition that makes his life a constant fight against the threat of paralysis and seizures.
His family hope it will be a moment of unity, one that raises awareness of his condition, Alternating Hemiplegia of Childhood, and an occasion they can all draw strength from. Their hope is that supporters will also hold a minute’s applause for their brave little boy in the seventh minute of the match against Manchester United – has e was seven months old when he received his diagnosis.
Speaking ahead of the match, when Hill Dickinson Stadium will be lit in the colours of the rainbow between 6pm and 7pm as a nod to Rupert’s Rainbow, the name of the awareness and fundraising campaign launched to help Rupert, his dad David, from Broughton, explained the significance of the occasion to them.
He told the ECHO: “It means more than we can put into words. To see a club like Everton light up the stadium in rainbow colours is amazing. Football has the power to unite people, and in that moment, Rupert isn’t just a baby with a rare condition, he’s part of something bigger.
“Our family are lifelong Everton supporters. To now see the club will be lighting up the stadium in rainbow colours for Rupert will be incredibly emotional. Everton is known as a family club, and right now we are a family who need support.”
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It will be a special moment when the family will see they are not facing their battle alone. It will also allow them to highlight the incredible resilience of Rupert, whose smile lights up the social media pages set up to provide updates on his fight against an ultra-rare condition that is being managed by Alder Hey and Wrexham Maelor hospitals.
Providing an insight into that fight, David, 39, said: “AHC causes sudden episodes of paralysis, seizures, abnormal movements and can affect his breathing. The episodes are unpredictable and can escalate very quickly.
“Day to day, it means constant vigilance. We monitor him closely for triggers like tiredness, excitement or illness. We carry rescue medication everywhere. He attends regular hospital appointments and therapy sessions. Some days are calm, others can change in seconds. It’s a life-threatening condition, so we are always alert.
“He’s only a baby, but he continues to smile through so much. Even after seizures or during paralysis, he often manages a grin. As parents, we feel overwhelming pride. He’s already faced more in his first months than many do in a lifetime. His resilience gives us strength when we feel exhausted or scared.”
For David and his wife, Siobhan, their effort on the Liverpool waterfront on Monday and through their social media pages is also part of work to support their goal to help Rupert access specialist help abroad. While there is no known cure at this stage, the USA is currently the hub for research into AHC and the family want to ensure they are best placed to access whatever help becomes available.
Aiming to raise £1.5m, David said: “Research for treatments and a cure are being developed in the United States. We want to be financially prepared to access specialist consultations, emerging treatments or clinical pathways as soon as they become available. For Rupert, that could mean reducing the severity or frequency of episodes, and ultimately the hope of a treatment and cure that changes the course of his condition.”
You can support Rupert’s Rainbow and find out more about his brave battle here
