Rupert’s Rainbow: Fed member's appeal to save son with ultra-rare condition

26 February 2026

A fundraising campaign launched by a North Wales Police Federation member after his son was diagnosed with an ultra-rare, incurable condition is gaining support from far and wide.

Police colleagues, members of the public, and even a Premier League football club have given their support to Sergeant Dave Smith and his eight-month-old son Rupert.

Everton Football Club lit up their new stadium in rainbow colours this week ahead of their fixture with Manchester United.

It was in support of Rupert, who has been diagnosed with alternating hemiplegia of childhood (AHC), and his Everton-supporting family.

 

Sergeant Dave Smith, son Rupert and wife Siobhan

 

Dave said: “I’ve been an Everton fan all my life, my dad is, and Rupert’s older brothers both are, so it meant a great deal to our family for the club to do something like that.”

The gesture has helped raise the profile of Rupert’s Rainbow, the fundraising and AHC awareness initiative set up to support Rupert.

AHC affects approximately one in a million children. It is characterised by unpredictable episodes of paralysis, seizures, abnormal movements, breathing difficulties, and developmental delay.

From just a few weeks old, Rupert began experiencing seizure-like episodes, resulting in multiple hospital admissions and countless appointments before his diagnosis at seven months old.

Stopped breathing

Dave said: “He has already endured more than most people will face in a lifetime. Despite everything, he continues to smile, and that smile is what gives us the strength to keep fighting for him every single day.”

Dave paid tribute to colleagues in the NHS for saving Rupert’s life on occasions when he has stopped breathing.

He said: “Unfortunately, currently there's no cure for Rupert’s condition. They're managing and monitoring symptoms through medication, physio, and a number of specialist departments.

“The NHS has saved his life. There's been a couple of times Rupert stopped breathing.

 

Everton FC's home ground lit up in rainbow colours for their game
against Manchester United. <picture c/o Everton Football Club>

 

“We will be forever grateful to the NHS and the emergency services, but in terms of a cure, there's nothing they can provide.”

He added: “It’s been referred to by specialists as a timebomb.

“We’re constantly living in fear and being vigilant, because there are a number of triggers that can set him off and cause a seizure and potentially stop him from breathing.”

Triggers can include changes in temperature and lighting, tiredness, excitement, and stress.

Treatment

Dave said research for AHC treatments is ongoing in the US, and the family is hopeful of a breakthrough.

“It's going to cost a significant amount of money, so we need to be financially ready when it's developed to take him straight away because it's time critical with Rupert,” he said.

David said he and his wife Siobhan felt ‘quite alone’ when Rupert was diagnosed.

“We were told there was no cure and there wasn't a great deal of information that they could provide us with,” he said.

“A lot of the consultants that he's currently under have no real knowledge or experience of AHC, so they're having to go away and read about it, learn about it.

Social media

“Through the power of social media, we’ve been able to reach out to families in America, who’ve got that lived experience of children who are six-years-old, and they can offer advice and support for us.

“We can pass on to medical professionals here what might work for Rupert.

“It's been a testing time, but with the support we've received, it's given us hope.

“There's a lot of good out there and it's so humbling to see people come together and it's given a lot of people purpose as well. 

“People are taking on challenges and doing different things for Rupert, people we don't know that are jumping out of aeroplanes and running marathons. It's incredible.”

Those fundraising efforts include colleagues across North Wales Police.

Children's hospital

“We are so thankful for the police family coming together,” he said.

“There was a charity event at work this week, with people on the treadmill covering the distance between our house and Alder Hey Children’s Hospital, where Rupert is being treated, and our Chief Constable took part in that, which is amazing.

“People are doing 10kms and marathons and it’s incredible.

“You hear about the police family and that is still very much the case. There is a lot of unity within the police, and it’s so nice when colleagues come together and offer that support.

“Work have been fantastic with the support they’ve provided me and I’m really grateful for that.”

A JustGiving page has been set up to support Rupert at: https://www.justgiving.com/crowdfunding/ruperts-rainbowahc

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