Buildings Across Three Countries Illuminate for Baby’s First Birthday
Buildings at 63 locations throughout Wales, the UK, and Canada were illuminated in rainbow colors to celebrate the first birthday of Rupert Smith, a baby boy diagnosed with a rare neurological disorder that causes frequent, life-threatening seizures.
Rupert, from Penymynydd in Flintshire, has a genetic condition known as Alternating Hemiplegia of Childhood (AHC), which affects approximately one in a million children.
Family’s Motivation and Awareness Campaign
Rupert’s father, Dave Smith, expressed a desire to do something meaningful for his son, stating that they had "nearly lost him so many times." The initiative also aims to raise awareness about this rare illness.
Among the landmarks lit for Rupert was Canada’s CN Tower, an event facilitated by Wrexham AFC’s transatlantic connections through its owner, actor Ryan Reynolds.
Medical Challenges Faced by Rupert
Rupert experiences regular seizures and has suffered episodes where he stopped breathing, necessitating emergency hospital admissions.
At just seven months old, his mother, Siobhan, had to perform CPR when he ceased breathing while they were in a shop.
AHC presents a wide range of symptoms beyond seizures, including abnormal eye movements, developmental delays, and cognitive impairments.
Due to the rarity of the condition, there is limited knowledge about it and no known cure at present.
Triggers and Impact on Daily Life
Numerous factors can trigger Rupert’s seizures, including heat. During a recent heatwave, his birthday garden party was held indoors, and he was only able to briefly come outside to have his cake.
"It was all for him, but he couldn't be a part of it because he could end up in hospital," said Dave Smith. "It was even more difficult because Rupert has two older brothers who wanted to play in the garden."
Previous Awareness Efforts and Participation of Landmarks
Rupert’s Rainbow AHC awareness campaign has previously been featured at Wrexham AFC games. Earlier this year, Everton football stadium was illuminated during a match against Wrexham.
On Thursday, 21 buildings, venues, and landmarks in Wales participated in the illumination event, including Cardiff Castle, St. Giles Church in Wrexham, and Gwrych Castle in Abergele.
Origin and Expansion of the Light Celebration
Dave Smith, who works as a police officer, explained that the idea for the birthday light celebration originated from a family friend who initially approached Chester Town Hall with the proposal.
"They agreed and it took off from there," he said. "We approached other buildings and venues and shared it on social media, [and] some then asked us if they could get involved."
He also contacted the CN Tower in Toronto because of Canadian star Ryan Reynolds’ links to Wrexham FC and northeast Wales.
"They were delighted and agreed to take part," Smith added.
Future Aspirations
Rupert’s father hopes that the illuminated buildings will encourage people to learn more about AHC. Ultimately, he and his wife aim to raise sufficient funds to take Rupert to the United States for treatment when it becomes available and to support further research into the condition.
