Everton will light up the Hill Dickinson Stadium to support the cause of Rupert Smith, an eight-month old baby who’s battling an extremely rare condition.
Young Rupert is fighting a one in one million condition, Alternating Hemiplegia of Childhood, and is constantly facing the threat of paralysis and seizures. The waterfront stadium will be lit up before the clash against Manchester United between 6pm and 7pm as a nod to Rupert’s Rainbow, the name of the awareness and fundraising campaign launched to help Rupert.
“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,” Rupert’s dad David told Liverpool ECHO.
“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.”
Rupert’s family believe it will be a moment of unity that raises awareness regarding this extremely rare condition. They also hope that supporters will hold a minute’s applause for their brave little boy in the seventh minute of the match. Rupert was seven months old when he received his diagnosis.
“AHC causes sudden episodes of paralysis, seizures, abnormal movements and can affect his breathing. The episodes are unpredictable and can escalate very quickly,” David added, providing an insight into Rupert’s daily fight.
“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.”
They’re also hoping that Rupert is able to access specialist care abroad. While there is currently no cure for AHC, the USA is currently the hub for research into this condition and the family want to ensure they are best placed to access whatever help becomes available.
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