A regional law firm has launched a major fundraising campaign to support a 13-month-old boy battling a rare genetic condition. The money raised will go towards a £1.5 million appeal to help little Rupert Smith access life-saving treatment and research for his illness.
Rupert's Condition and Urgent Need
Rupert has Alternating Hemiplegia of Childhood, a rare brain condition that causes fits, paralysis, and severe breathing problems. His parents are working tirelessly to secure specialist therapy in America while scientists work on a potential cure. The urgent need for funding comes after the young boy suffered several dangerous episodes where he temporarily stopped breathing.
Siobhan Smith, Rupert's mum, said: "He had his first episode in November when he stopped breathing, fortunately that time we were in hospital. And then it happened again in January, then February and then again in May. They are the really life-threatening episodes."
Fundraising Event Details
Staff at Swayne Johnson have organised a special fundraising evening featuring a three-course dinner, live entertainment, and a grand auction. Guests can win exciting prizes, including a football signed by sports stars, alongside luxury overnight stays donated by local businesses. The evening will take place on September 11, at The White House, Rhuallt, Denbighshire. Ticket options can be found online.
The overall campaign has already raised about £400,000 to help fund the specialist medical care. More than £330,000 of that total has come directly from public donations on a dedicated online giving page.
Mother's Gratitude
Siobhan Smith expressed her gratitude: "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."
She added: "The Swayne Johnson fundraiser is such an amazing event. 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."
Treatment and Cure Prospects
Siobhan highlighted the disparity in therapy: "American children get three physiotherapy sessions a week, and they get occupational therapy and speech and language support. It is evident that Rupert is not getting anywhere near the therapy offered in America."
She shared promising developments: "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."
Organiser's Motivation
The event has been organised by private client solicitor Olivia Brown, who collected many of the auction prizes. She felt moved to help the family because her own young son is almost the same age as Rupert.
Olivia Brown said: "Local businesses have been so generous in supporting the event. They've donated some amazing prizes as well as booked tickets. 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 well-being of our children means absolutely everything. Rupert is a gorgeous boy, and his family are amazing."
She continued: "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."
Firm's Support
Lynette Viney-Passig, managing director, 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."
She added: "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."
She concluded: "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."
How to Support
The law firm is also hosting a social media contest where people can win two free tickets to the charity dinner. To buy tickets, visit the Eventbrite page. To learn more about the appeal or donate, visit rupertsrainbow.com.
