A fundraising evening organised by law firm Swayne Johnson has raised £7,278 for the appeal for 16-month-old Rupert Smith, from Penymynydd in Flintshire.
Rupert has Alternating Hemiplegia of Childhood (AHC), a genetic neurological condition affecting one child in a million, which can trigger seizures, paralysis-like episodes and life-threatening breathing difficulties.
His parents, Siobhan and Dave Smith, are raising money through Rupert’s Rainbow to fund research into the condition and give their son access to specialist treatment in America while researchers work towards a cure. The appeal has a £1.5 million target and now stands at over £435,000.
The event at the White House in Rhuallt included a dinner, entertainment, a raffle and an auction. Rupert’s uncle, Liam McHugh, spoke at the event about the impact of Rupert’s illness, and Siobhan was a guest of honour.
The evening was organised by Swayne Johnson private client solicitor Olivia Brown, who gathered most of the auction and raffle prizes.
Olivia said: “When Liam spoke it was really emotional, there were quite a lot of tears in the room.”
She added: “We had about 125 people attend and that included Swayne Johnson staff, our families and friends.”
Businesses that work with the firm, including Williams Estates, Reid and Roberts estate agents, Whites Removals and Bone & Payne Solicitors, also supported the event.
Swayne Johnson’s Managing Director, Lynette Viney-Passig, said: “Rupert is a little boy who is literally one in a million, his condition is incredibly rare.”
She added: “We had a cautious estimate of about £2,500, so to triple that is just amazing.”
Rupert’s dad Dave, a police sergeant who was awarded a British Empire Medal for his charity work, thanked Swayne Johnson for organising the fundraiser. He said Liam had flown from his home in Australia to accompany the family to Paris, where they were attending a conference about AHC, and so was also able to attend the fundraiser with Siobhan.
Dave said: “The fact that we are trying to raise awareness of this condition, and people are willing to help and support us, really gives us hope for Rupert’s future.”
He added: “It is achievable, but it will take a lot of hard work, though with the support we are receiving, we have got hope.”
Swayne Johnson has offices in St Asaph, Mold, Ruthin, Denbigh, Llandudno and Tattenhall, near Chester.
