North Wales fundraiser launched for toddler with rare neurological condition

Nation.Cymru Staff

A major fundraising event has been launched to help a 13-month-old north Wales boy with a one-in-a-million neurological condition.

Rupert Smith, whose rare condition can trigger seizures, paralysis-like episodes and life-threatening breathing difficulties, is the focus of a charity event from a north Wales law firm, Swayne Johnson, who are fundraising in aid of his £1.5 million Rupert’s Rainbow appeal.

Rupert, from Penymynydd in Flintshire, has Alternating Hemiplegia of Childhood (AHC), a genetic neurological condition which affects just one child in a million.

His parents, Siobhan and Dave Smith, are raising money to fund research into the condition and give their son access to specialist treatment in America while researchers work towards a cure.

At the same time the couple are trying to keep life as normal as possible for their two other children, George, six, and four-year-old Henry.

The fundraiser will take place at The White House, in Rhuallt, in Denbighshire, on Friday, September 11, with a three-course meal, entertainment from comedian Brendan Riley, raffle, auction and bingo.

Among the auction and raffle prizes are a football signed by Liverpool and Wales football legend Ian Rush, overnight stays, race day tickets and vouchers offered by a whole host of local businesses.

Staff at Swayne Johnson, which has offices in St Asaph, Mold, Ruthin, Denbigh, Llandudno and Tattenhall, near Chester, hope the event will raise a significant amount of money for the appeal.

Rupert’s mum Siobhan said: “We really appreciate Swayne Johnson’s support, it is wonderful.

“The support we are getting as a family from the whole community is just phenomenal. It’s overwhelming.

“I don’t think words will ever be enough to say thank you to everyone who is helping us, all we can say is a big thank you.

“The Swayne Johnson fundraiser is such an amazing event.”

The appeal total stands  at about £400,000 with more than £330,000 of that has been raised by the family’s JustGiving page while about £70,000 has come from other donations.

Siobhan added: “I know I am his mum, but I don’t think you can’t be moved by his story, he is such a gorgeous little boy and has such a lovely nature and smiles through everything.”

Rupert’s dad Dave, a police sergeant who was awarded a British Empire Medal for his charity work, recently visited Boston to attend the Cure AHC foundation’s family meeting.

“American children get three physiotherapy sessions a week and they get occupational therapy and speech and language support,” said Siobhan.

“It is evident that Rupert is not getting anywhere near the therapy offered in America.

“When Dave was over in Boston he spoke to other families and they were saying the trials have had really good results.

“They are developing a treatment and also developing a cure.

“The cure has had such good results that Cure AHC have just been granted $34.5 million to expedite it.

“The cure for Rupert should be ready in about three years so we need to fund three years’ worth of treatment for Rupert and then fund the cure.”

The Swayne Johnson fundraiser has been masterminded by private client solicitor Olivia Brown who has gathered most of the auction and raffle prizes.

Mum-of-one Olivia said: “Local businesses have been so generous in supporting the event.  They’ve donated some amazing prizes as well as booked tickets.

Olivia said Rupert’s plight particularly struck her as her own 14-month-old son Noah is only a little older.

She said: “I just felt compelled to do something. As a mum of a little boy so close to Rupert’s age, I appreciate how the health and wellbeing of our children means absolutely everything. Rupert is a gorgeous boy and his family are amazing.

“All my colleagues here at Swayne Johnson have been moved by Rupert’s story.

“They have bought tickets to the event for themselves, their friends and family and have supported the firm and me in putting together such a wonderful evening

“I would urge anyone considering coming along to the fundraiser to buy their tickets now, because it will be an amazing night for an amazing little boy.”

Swayne Johnson’s Managing Director, Lynette Viney-Passig, who has three children, said: “When Olivia first pitched her idea to me, it was impossible to say no. I had already been following Rupert’s story and that of his family.

“I was incredibly impressed by Olivia’s professionalism, enthusiasm and determination to organise a fundraiser that would not only raise much-needed funds for Rupert but also increase awareness of his journey.

“I was delighted to offer the firm’s financial backing and planning support. Organising a large-scale fundraising event takes an enormous amount of time, effort and dedication, and Olivia has thrown herself into every aspect of it.

“We’ve been holding fortnightly planning meetings to help ensure everything runs smoothly, and I couldn’t be prouder of what she has achieved.

“Olivia’s hard work, together with the incredible support of her colleagues across Swayne Johnson, says everything about the kind of firm we are and aspire to be. For more than 175 years, we have been proud to serve the communities in which we live and work. We believe in making a genuine, positive difference because local lives matter.”

Swayne Johnson are running a competition to win two free tickets to the event.

All people need to do is visit the firm’s Facebook page, share the post about the fundraiser and comment on who they would bring with them to the event.

The winner will be chosen at random by Swayne Johnson.

According to Siobhan, the urgency of the fundraising campaign had been underlined after Rupert suffered a number of episodes where he stopped breathing.

“He had his first episode in November when he stopped breathing, fortunately that time we were in hospital,” she said.

“And then it happened again in January, then February and then again in May.

“They are the really life-threatening episodes.”

Tickets for the fundraiser are available at www.eventbrite.co.uk/e/ruperts-rainbow-fundraiser-hosted-by-swayne-johnson-solicitors-tickets-1990559842072

For more information about Rupert’s Rainbow and to donate to the appeal, people can visit www.rupertsrainbow.com

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