Hill Dickinson Stadium will be lit in rainbow colours for little boy with rare condition tonight

Everton’s Hill Dickinson Stadium will light up in rainbow colours at tonight’s match against Man United for a little boy with a rare condition.

Dave and Siobhan Smith’s baby son Rupert was diagnosed in January with a neurological condition called Alternating Hemiplegia of Childhood (AHC) that affects only one in a million children.

Since then the family has launched Rupert’s Rainbow, a campaign to raise awareness of AHC and also raise funds for treatment in the US where research is at a more advanced stage.

Evertonian Dave, who’s a police officer, contacted the club to ask if they would do a clap for Rupert.

His appeal, which also went out on social media, was spotted by fan groups and the family was delighted when the Blues replied to say they were happy to help.

Everton FC Hill Dickinson Stadium Rupert's Rainbow

Dave explained:

“We live in Broughton near Chester, not too far from Wrexham, and I’ve done quite a lot of community and fundraising work at their club. They invited us and had a clap for Rupert so I thought being Evertonians maybe the club that means so much to us could do something.

“I just put it out there on social media, and contacted the club direct, a few fan groups saw and shared it and we got quite a quick response.

“We’re hoping to do the clap on seven minutes as well, because Rupert was seven months old when he was diagnosed and there are seven colours in the rainbow, and they offered to light up the stadium which we weren’t expecting.

“The club has kindly given me a ticket, so I can be there near my dad who’s a season ticket holder to see the stadium lit up which will be amazing.”

Dave and Siobhan, who have two other boys aged four and six, are still coming to terms with Rupert’s diagnosis and what it will mean for his future.

Dave said:

“His condition is an umbrella of different things that can happen to him including cerebral palsy, Parkinson’s, stroke, and paralysis,”

“The last time he was in Alder Hey his full body was paralysed for two or three days.

“We’re in a state of vigilance all the time because a number of things can trigger it as well, so it could be too hot, too cold, too tired, too upset, too excited, or even a common cold. Any of those things could trigger having a seizure and ultimately could potentially kill him.

“They refer to AHC as a timebomb because he can be laughing and smiling one minute then deteriorate so quickly and stop breathing and the next minute we have air ambulance and paramedics at the house.”

Rupert’s best hope of treatment and even a cure lies in America, which is why Dave and Siobhan set up a Go Fund Me page for Rupert’s Rainbow.

They said:

“We’ll be forever grateful for what the NHS have done, the management of his symptoms and they’ve saved his life on numerous occasions when he’s stopped breathing.

“But families in America have been fundraising for a number of years to pay for research into treatment and a cure so it’s at quite an advanced stage over there. Treatment is likely to be available in the next 12 months, so he’ll have to go out to the US for that, and we’re looking at a cure being about 3-4 years off.

“In the meantime we’re following developments over there, and I’m going to Boston in June to meet the researchers and clinicians and get them to know Rupert. At the moment it’s damage limitation, maintaining with medication, physio, and doing the best we can to keep him as well as we can up until the point where we can get treatment and a cure.”

Dave tells us their fundraising isn’t just for Rupert’s future, but to support research into the condition which is ultra-rare so other children will benefit.

He said:

“When we were given the diagnosis we felt quite alone because there’s not a lot of knowledge around it so we thought we had to share Rupert’s story. We’ve got no other choice but to try and raise this money and get him out there.

“Since we’ve put his story out, so many people have put on events and taken on challenges for him. There’s a lot of negativity out there, but hopefully Rupert can show there is a lot of good and a lot of hope too.

“If for one minute tonight people can join together and clap for him that would be incredible.”

Find out more about Rupert’s Rainbow here, or donate to the cause here.

It was recently revealed that Hill Dickinson Stadium will host its first Rugby Union game this summer.

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