Buildings lit up for baby with one-in-a-million illness

Buildings at 63 locations across Wales, the UK and Canada have been lit up in rainbow colours to mark the first birthday of a baby boy who suffers from a rare disorder which leads to frequent, life-threatening seizures.

Rupert Smith, from Penymynydd in Flintshire, has a genetic neurological condition called Alternating Hemiplegia of Childhood (AHC), affecting about one child in a million.

Dave Smith said he wanted to do something special for his son because they had "nearly lost him so many times" - and to raise awareness about his rare illness.

Canada's CN Tower was among the landmarks lit up for Rupert, thanks to Wrexham AFC's transatlantic links with owner Ryan Reynolds.

Rupert has regular seizures and has stopped breathing on a number of occasions, resulting in emergency admissions to hospital.

When Rupert was just seven-months, his mum, Siobhan, had to administer CPR after he stopped breathing in a shop.

AHC has a long list of additional symptoms, from abnormal eye movements to developmental delays and cognitive impairment.

But because the condition is so rare little is known about it and there is currently no cure.

There are also numerous triggers for baby Rupert's seizures, including heat.

During the recent heatwave, the little boy had to stay indoors for his birthday garden party, only coming outside for his cake.

"It was all for him, but he couldn't be a part of it because he could end up in hospital," his dad said, adding that it was even more difficult because Rupert has two older brothers who wanted to play in the garden.

Rupert 's Rainbow AHC awareness campaign has previously featured at Wrexham AFC games, with Everton football stadium lit up during a match against Wrexham earlier this year.

In Wales, 21 buildings, venues and landmarks took part in the illuminations on Thursday, including Cardiff Castle, St. Giles Church in Wrexham, and Gwrych Castle in Abergele.

Smith, who is a police officer, said the idea of the birthday light celebration came from a family friend, who first approached Chester Town Hall with the idea.

"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 said he approached the CN Tower in Toronto because of Canadian star Reynolds' links to Wrexham FC and north-east Wales.

He said they were "delighted" and agreed to take part.

Rupert's father said he hoped seeing the buildings lit up might prompt people to find out more about the condition.

Eventually, he hopes he and his wife will be able to raise enough money to take Rupert to the United States for treatment, when it is available, and for further research into the condition.