£1.5m treatment target ‘achievable’ for toddler with rare genetic disorder

Nation.Cymru Staff

The family of a north Wales toddler with an extremely rare genetic disorder say their £1.5m fundraising target for life-changing treatment finally feels “achievable” after a charity football match.

Dave and Siobhan Smith say they are now around £400,000 into their fundraising campaign to get 16-month old Rupert the treatment he needs in America after another show of support from the community.

The match between Wrexham Police FC and men’s suicide prevention charity Andy’s Men’s Club at Airbus in Broughton, with donations, a raffle and a £1,500 cheque from the Wings Club Broughton, which is part of Airbus, all adding to the total.

But with the campaign now gathering pace, the couple say they want the Rupert’s Rainbow campaign to reach far beyond north east Wales.

Rupert, from Penymynydd in Flintshire, was diagnosed with Alternating Hemiplegia of Childhood (AHC) – an extremely rare, and life-threatening, genetic disorder, affecting around one in a million children.

Siobhan said: “When we first made the enquiries about the treatment in America and the cost, it was astronomical.

“At the time, all we saw was £1.5million but you can see how far we’ve come since January and it actually feels that it could be achievable, especially with the community we’ve got behind us.

“We’ve raised such a huge amount in such a short time but we’ve just got to keep going and we appreciate what people do because currently, financial times are tough for people.

“We don’t expect people to donate if they can’t and it is great if they can share – but they are donating and we’re really thankful for that.”

Dave, a sergeant with North Wales Police, added: “The way people come together gives us hope, really.

“Rupert fights and does it with a smile and that keeps us going but seeing everyone coming together does give us hope.

“There’s so much good out there and it’s amazing how together everyone has been for us.

“It’s not just friends and family – it’s strangers too, people we’ve never met or who have never met Rupert and yet they want to help him. That’s what is overwhelming.

“People buy into the journey so now we want Rupert’s Rainbow to go further afield as there’s only so much the community can be asked to give.

“We also want to raise awareness of this condition – we didn’t know what it was, his consultants didn’t have much experience of it and there’s only about 60 families in the UK who are diagnosed with it.”

According to Dave, it was also good to be able to shine a light on the brilliant work of Andy’s Man Club because they save lives.

“There will be guys here today with their own concerns and they’ve come here to help Rupert,” he said.

“Today is the Rupert’s Rainbow Cup and in future, we want that to help give back to other charities as well. Hopefully we can help other people.”

Dan Rowe, regional manager for Andy’s Man Club, said that helping Rupert’s Rainbow ‘makes us very proud’.

He said: “As a charity, we receive so much community support and Dave has been one of the leading people in this area championing what we do.

“It’s rare to get the chance to give something back so when the chance to come to play football and be part of this big event, I was more than thrilled to say yes.”

Ray Littler, director at Wings Club Broughton, said: “We decided that Rupert’s Rainbow would be one of our charities this year.

“What we do is guarantee a percentage of our turnover will go towards our chosen charities – Rupert is one of them – but we’re also associated with them because they’ve been using our pitch for their charity games.

“We’ve donated £1,500 today – we’re proud and humbled to do so but it’s a very noble thing that people are trying to do.”

“I would encourage everyone to donate.”

It was a sentiment endorsed by Mark George, from Foundations Gym in Bagillt, who handed over a £220 donation, and Wrexham Mayor, Cllr Jeremy Kent.

“Each got in the region of £220 each.

Cllr Kent said: “I’ve so proud to be here today to support Rupert’s Rainbow as such a worthy cause but, separately, Andy’s Man Club is one of my charities of the year.

“It’s great to be here to support both charities.

“This is what Wrexham does really well – it’s that community bringing people together for a very worthy cause and wanting to support as much as they can.

“You can see that throughout Wrexham.”

In the event the Wrexham Police FC won the match 9-2 but the real winner was little Rupert.

For more information about Rupert’s Rainbow and to donate to the appeal, visit the website here.

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