October 05, 2026 - 221 views
More than £7,000 has been raised to help a North Wales toddler battling a condition which affects just one child in a million.
Sixteen-month-old Rupert Smith, from Penymynydd, has Alternating Hemiplegia of Childhood (AHC), a rare genetic neurological condition which can cause seizures, paralysis-like episodes and serious breathing difficulties.
A fundraising evening organised by North Wales law firm Swayne Johnson raised £7,278 for Rupert’s Rainbow, the family’s appeal to fund research into AHC and help Rupert access specialist treatment in America.
There were emotional scenes at the event at the White House in Rhuallt when Rupert’s uncle Liam McHugh spoke about the youngster’s condition and the impact it has had on the family.
Around 125 people attended the evening, which included dinner, entertainment, a raffle and an auction. The event was organised by Swayne Johnson private client solicitor Olivia Brown, who also secured many of the prizes from local businesses.
The amount raised was almost three times the organisers’ original target for the evening of £2,500.
Liam had travelled from his home in Australia to support the family and had also accompanied Rupert’s parents, Siobhan and Dave Smith, to Paris for a conference about AHC.
Rupert’s dad Dave said hearing directly from a family member had helped those attending understand what life is like for Rupert and his family.
“Sometimes people just see the fundraising cause and see Rupert's photo, his beautiful eyes, his curly hair, and his smile,” he said.
“I think it is more impactful sometimes hearing it from those directly involved, it feels more personal.”
Dave said the family had initially felt isolated after Rupert’s diagnosis because of the rarity of the condition, but the support they had received from people across North Wales had given them renewed hope.
“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 said.
The Rupert’s Rainbow appeal is aiming to raise £1.5 million, with more than £435,000 now raised.
Swayne Johnson managing director Lynette Viney-Passig said Liam’s speech had been particularly moving and had reminded everyone why they were supporting the fundraiser.
“Rupert is a little boy who is literally one in a million, his condition is incredibly rare,” she said.
“His story resonates with all of us, and it hits all of us hard.”
She also thanked the businesses which donated prizes and supported the event.
Dave said the family were “deeply grateful” for the support they had received from communities across North Wales, but said the appeal now needed to reach a wider audience to help it reach its £1.5 million target.
“We need it to go further afield now to reach the target,” he said.
“It is achievable, but it will take a lot of hard work, though with the support we are receiving, we have got hope.”
For more information about Rupert’s Rainbow and the appeal, visit the charity’s website.
