Clap for Rupert: Wrexham fans unite for baby fighting for life

Stephen Price

Wrexham football fans are being urged to clap for a seriously ill baby during the club’s home match against Millwall.

Supporters have been asked to applaud for 60 seconds in the seventh minute in tribute to seven-month old Rupert Smith who is fighting for his life at Alder Hey Children’s Hospital in Liverpool.

He was diagnosed with one of the rarest diseases in the world – Alternating Hemiplegia of Childhood (AHC) – which affects only one in a million children in the world.

The emotional tribute has been organised by the club and Rupert’s family to show his parents they are not facing the terrifying battle alone.

Rupert is the son of medal-winning North Wales Police officer Sgt Dave Smith and his wife Siobhan who have launched a £1.5 million appeal.

The tot is under round-the-clock care after suffering a life-threatening seizure while out shopping with his mum, which saw him being airlifted by helicopter from Tesco at Broughton Shopping Park.

For a time his devastated family feared the had lost him but doctors managed to bring him round.

At present, he can only move his eyes with just the occasional movement of his arms and legs.

As friends, neighbours and the wider community rally around the family, Wrexham AFC is hoping to give the fund-raising appeal a big boost with the poignant tribute during Millwall match at the SToK Cae Ras on Saturday, February 7.

The minute has been chosen because Rupert is seven months old. As well as showing solidarity with his family, the aim is to raise awareness of Alternating Hemiplegia of Childhood and send a powerful message that Rupert is not fighting this battle alone.

It is not the first time the family has faced a major fight. Aged just 40, Rupert’s dad Dave is currently in remission after previously battling testicular cancer and undergoing intensive chemotherapy.

But despite everything they have been through, Dave and his wife Siobhan have always put their community first.

Over the years they have supported numerous good causes and thrown themselves into community events in their home village of Broughton and across the region.

Dave, who has served as a police officer for 17 years, was awarded a British Empire Medal in the King’s 2025 New Year Honours list in recognition of his services to the North Wales community and to charity.

However, since Rupert was born, the challenge facing the family has been greater than anything they have ever known – and the stakes have never been higher. Their lives have been completely transformed.

For Dave and Siobhan, who also have two other young sons, it is like sitting on a constantly ticking time-bomb.

Rupert’s condition is so unpredictable that almost any slight change in his environment or daily routine can convulsions which could stop him breathing.

Thankfully, given his young age, Rupert seems unaware of the anxiety which surrounds him. On his good days he lights up the room with his bright and irresistible smile.

But his parents have both had to take temporary leave from work and when Rupert is at home he needs constant monitoring which means they can barely take their eyes off him, day or night.

Dave said a seizure can be brought on by so many different triggers: “It could be as simple as hunger, stress, over excitement, contact with water or tiredness. We have to be constantly vigilant.”

At the same time they also need to be attentive to the needs of Rupert’s brothers, Henry, aged four and George, six.

George recently had his sixth birthday party by his baby sibling’s side at Alder Hey Hospital.
Dave explained: “We had planned a little party at home for George but after Rupert’s seizure we had no choice but to cancel our original plans.

“The staff at Alder Hey were so kind and let us celebrate his birthday at the hospital. We had a cake and they even helped organise a mini treasure hunt for him.

“We cannot thank them enough, along with everyone else who has supported us during this difficult time.”

While Siobhan is at the hospital, Dave tries to keep life as normal as possible for Henry and George, continuing with the school runs, meals and bedtime routines.

Once the boys are asleep he works hard to organise fund-raising and update the Rupert’s Rainbow Just Giving page at https://www.justgiving.com/crowdfunding/ruperts-rainbowahc

There is currently no cure or reliable treatment for the genetic disorder AHC which puts its helpless victims at a hugely increased risk of sudden death, brought about by unpredictable seizures, breathing difficulties, developmental delay and partial or total paralysis.

Dave believes Rupert is one of just three children in Wales diagnosed with the condition but he has not managed to trace the other Wales-based families.

Most patients are in the USA where affected families have been working together to fund research into more effective treatments and potential cures.

Dave and Siobhan, an NHS pharmacy technician, have been in online contact with American families to arm themselves with as much information as they can about AHC.

Dave aims to attend a conference in Boston in June where he plans to meet other families, along with clinicians working on developing treatment plans.

He said: “Going to the USA is our only option as there is no meaningful research being undertaken anywhere else. But in the States some real progress has been made, albeit in the early stages.

“However, there is no NHS in the States and when it becomes available any treatment will be expensive, much more than we could ever afford without help.”

Dave added: “The research is concentrated around gene therapy which could disarm the defective cells causing AHC. In essence they would take out a defective gene, correct it and then return it to the body so that it can educate other faulty genes to adjust the way they behave.

“If trials prove successful it could be our only lifeline for Rupert, which means we have to be ready to go at any moment. We are pinning our hopes on those medical advances which could save his life and the lives of other children in his position.”

Dave, backed by wife Siobhan, is no stranger to fundraising. In the past three years, with the support of friends, colleagues and the local community, they have helped raise more than £60,000 for good causes.

He is a founder of Wrexham Police Football Club, a team of off-duty officers set up to bring communities together and raise money for charity.

The club has gone on to donate thousands of pounds to causes including hospices, homeless charities, mental health services, domestic abuse support groups and the children’s ward at Wrexham Maelor Hospital.

But Dave never imagined his own family would one day need that same ward.

He said: “We’ve always tried to help others whenever we can. Now we have no choice but to do everything possible for Rupert. It’s exhausting, but every minute counts.”

The family has been overwhelmed by the response so far, with the appeal already nearing £100,000 in just a few weeks — but much more is still needed.

“We are incredibly grateful to the NHS and the outstanding medical teams who have cared for Rupert,” said Dave.

“They have done absolutely everything possible to investigate his condition, stabilise him, and provide ongoing specialist support.

“However, due to the rarity and complexity of AHC, care is limited to managing symptoms and responding to medical emergencies as they arise.

“The only potential for a cure lies in ongoing research and clinical developments in the United States, which require significant private funding.

“If you are able to donate, any amount, no matter how small, would mean the world to us. If you’re unable to donate, please consider sharing Rupert’s story, as that is just as important and may help us reach someone who can.”

Anybody wishing to donate can do so via the Just Giving page: https://www.justgiving.com/crowdfunding/ruperts-rainbowahc