'Our little boy was reason Everton stadium lit up'

The father of a baby in whose honour Everton lit up their stadium in rainbow colours last week says it was "pretty special".

Eight-month-old Rupert has been diagnosed with the rare incurable condition Alternating Hemiplegia of Childhood (AHC), which means he can sometimes struggle to breathe.

His father David, who is an Everton fan from North Wales, is trying to raise funds for his treatment, while improving awareness of the illness which affects one-in-a-million.

Having done previous charity work with the club, he asked them if they could light up the stadium after launching his fundraiser Rupert Rainbows.

"We chose the rainbow because obviously it's hope, so to see the rainbow lighting up the skyline of Liverpool and to know 50,000 people were going to be there – who can find out it's about Rupert and now know about AHC that didn't previously."

He and his wife, who also have two other sons, first noticed Rupert was having health struggles a few weeks after birth when he would frequently flicker his eyes and when his body became rigid.

Doctors undertook various tests in Wrexham and Liverpool's Alder Hey Hospital and initially struggled to find the reason before they diagnosed AHC in January.

"We felt quite alone really when we got that," David says.

"We were told there's no cure, there's no treatment, there's only management of his symptoms through medication and appointments with various departments."

He says Rupert can have a seizure if he's startled by water and "if he gets too excited, too hot, too cold - if he's hungry, tired".

"In two instances, he's had a common cold and that's affected him so much so he's deteriorated quite quickly and stopped breathing."

An air ambulance had to take him to hospital on one occasion after he stopped breathing in a supermarket, when his mum had to give him CPR.

David says: "He has to sleep with monitors to check his oxygen levels and his heart rate as well. So we're just on tenterhooks all the time, really."

He says the support from the NHS in both North Wales and Alder Hey has been "amazing".

"They've saved his life. We'll be forever grateful for what they've done for him."

He's currently trying to raise £1.5m to raise awareness and for future treatment in the US, where there has been some development in trying to get a cure.

"We need to do what we can to be financially ready to get him out to the States. And obviously, given the amount that we need, it's something we need to do now, rather than later."

David, who works as a police officer, is planning to do a 22-mile walk from his home in Broughton, Flintshire to Everton's stadium on 21 March, when they play Chelsea at home.

He is in remission for cancer and developed nerve issues with his feet as a consequence.

"It's going to be a challenge in itself for me to walk that distance but if Rupert can get through what he's going through with a smile, I'm going to do what I can to best help my own son."

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