A North Wales law firm has launched a major fundraiser to help a 13-month-old boy battling a devastating one-in-a-million condition.<\/p>\n
Swayne Johnson, which has offices in St Asaph, Mold, Ruthin, Denbigh, Llandudno\u00a0and\u00a0Tattenhall, near Chester, \u00a0has organised a charity event in aid of the \u00a31.5 million Rupert\u2019s Rainbow appeal for little Rupert Smith whose rare illness can trigger seizures, paralysis-like episodes and life-threatening breathing difficulties.<\/p>\n
Rupert, from Penymynydd in Flintshire, has Alternating Hemiplegia of Childhood (AHC), a genetic neurological condition which affects just one child in a million.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Staff at Swayne Johnson hope the event will raise a significant amount of money for the appeal.<\/p>\n
Rupert\u2019s mum Siobhan said: \u201cWe really appreciate Swayne Johnson\u2019s support, it is wonderful.<\/p>\n
\u201cThe support we are getting as a family from the whole community is just phenomenal. It\u2019s overwhelming.<\/p>\n
\u201cI don\u2019t\u00a0think words will ever be enough to say thank you to everyone who is helping us, all we can say is a big thank you.<\/p>\n
\u201cThe Swayne Johnson fundraiser is such an amazing event.\u201d<\/p>\n
The appeal total stands\u00a0 at about \u00a3400,000 with more than \u00a3330,000 of that has been raised by the family\u2019s JustGiving page while about \u00a370,000 has come from other donations.<\/p>\n
Siobhan added: \u201cI know I am his mum, but I don\u2019t think you can\u2019t be moved by his story, he is such a gorgeous little boy and has such a lovely nature and smiles through everything.\u201d<\/p>\n
Rupert\u2019s 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\u2019s family meeting.<\/p>\n
\u201cAmerican children get three physiotherapy sessions a week and they get occupational therapy and speech and language support,\u201d said Siobhan.<\/p>\n
\u201cIt is evident\u00a0that Rupert is not getting anywhere near the therapy offered in America.<\/p>\n
\u201cWhen Dave was over in Boston\u00a0he spoke to other\u00a0families\u00a0and they were saying the trials have had really\u00a0good results.<\/p>\n
\u201cThey are developing a treatment and also\u00a0developing a cure.<\/p>\n
\u201cThe cure has had such\u00a0good results that\u00a0Cure AHC\u00a0have just been granted $34.5 million to expedite it.<\/p>\n
\u201cThe cure for Rupert should be ready in about three years\u00a0so we need to fund three years\u2019 worth of treatment for Rupert and then fund the cure.\u201d<\/p>\n
The Swayne Johnson fundraiser has been masterminded by private client solicitor Olivia Brown who has gathered most of the auction and raffle prizes.<\/p>\n
Mum-of-one Olivia said: \u201cLocal businesses have been so generous in supporting the event.\u00a0 They\u2019ve donated some amazing prizes as well as booked tickets.<\/p>\n
Olivia said Rupert\u2019s plight particularly struck her as her own 14-month-old son Noah is only a little older.<\/p>\n
She said: \u201cI just felt compelled to do something.As a mum of a little boy so close to Rupert\u2019s age,\u00a0I appreciate how the health and wellbeing of our children means absolutely everything. Rupert\u00a0is a gorgeous boy and his family are amazing.<\/p>\n
\u201cAll my colleagues here at Swayne Johnson have been moved by Rupert\u2019s story.<\/p>\n
\u201cThey 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<\/p>\n
\u201cI 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.\u201d<\/p>\n
Swayne Johnson\u2019s Managing Director, Lynette Viney-Passig, who has three children, said: \u201cWhen Olivia first pitched her idea to me, it was impossible to say no. I had already been following Rupert\u2019s story and that of his family.<\/p>\n
\u201cI was incredibly impressed by Olivia\u2019s 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.<\/p>\n
\u201cI was delighted to offer the firm\u2019s 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.<\/p>\n
\u201cWe\u2019ve been holding fortnightly planning meetings to help ensure everything runs smoothly, and I couldn\u2019t be prouder of what she has achieved.<\/p>\n
\u201cOlivia\u2019s 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.\u201d<\/p>\n
Swayne Johnson are running a competition to win two free tickets to the event.<\/p>\n
All people need to do is visit the firm\u2019s Facebook page, share the post about the fundraiser and comment on who they would bring with them to the event.<\/p>\n
The winner will be chosen at random by Swayne Johnson.<\/p>\n
According to Siobhan, the urgency of the fundraising campaign had been underlined after Rupert suffered a number of episodes where he stopped breathing.<\/p>\n
\u201cHe had his first episode in November when he stopped breathing, fortunately that time we were in hospital,\u201d she said.<\/p>\n
\u201cAnd then it happened again in January, then February and then again in May.<\/p>\n
\u201cThey are the really life-threatening episodes.\u201d<\/p>\n
Tickets for the\u00a0fundraiser are available at\u00a0<\/strong>www.eventbrite.co.uk\/e\/ruperts-rainbow-fundraiser-hosted-by-swayne-johnson-solicitors-tickets-1990559842072<\/strong><\/a><\/p>\n For more information about Rupert\u2019s Rainbow and to donate to the appeal, people can visit\u00a0<\/strong>www.rupertsrainbow.com<\/strong><\/a><\/p>\n