Dave and Siobhan SmithA baby with a rare neurological disorder, airlifted to hospital after collapsing in a supermarket, is not “out of the woods yet”, said his father.
Seven-month-old Rupert Smith, from Broughton, Flintshire, stopped breathing in a Tesco store in Broughton Park, on Monday.
His mother Siobhan, 35, immediately called for help and administered CPR before emergency services, including paramedics, police and an air ambulance arrived.
Rupert, who has a disorder called alternating hemiplegia of childhood (AHC), was flown to Alder Hey Children’s Hospital in Liverpool for treatment.
Dave and Siobhan SmithDad Dave Smith said Rupert had “continued to have quite significant seizures [in hospital] so they have been giving him medication and he has undergone various different tests”.
The 39-year-old added: “He is not completely stable and out of the woods yet.”
The medical emergency at about 10:35 GMT saw the supermarket evacuated and the entrance to Broughton Shopping Park blocked by police.
Smith, a Flintshire police sergeant, said the family had just popped into the store to print out some documents, ahead of taking Rupert for an appointment at Alder Hey Children’s Hospital, when they noticed Rupert had become vacant and unresponsive.
The child had suffered a seizure and was struggling to breathe and deteriorating quite quickly, he said.
“I am very proud of my wife for what she did – ringing for an ambulance and she had to administer CPR while waiting for paramedics,” Smith added.
Dave and Siobhan SmithHis colleagues from North Wales Police were also quickly on scene, said the dad, adding that he and his wife were grateful for everyone’s support, including NHS staff at Wrexham Maelor Hospital and Alder Hey, who “have been fantastic”.
Smith said it was a “worrying time”, explaining that what happened to Rupert “can happen at any time” due to his condition.
He said: “It’s such a rare condition and there is only so much they [the NHS] can do.
“We have got to go to the US to get treatment.”
His wife added: “We just need to save his life… please, please help save our baby boy.”
The couple, who have two other sons, aged four and five, have launched a charity called Rupert’s Rainbow to raise funds for Rupert to take part in clinical trials in the US as well as fund research into the rare condition.
Siobhan Smith, an NHS pharmacy technician, and her husband said they have raised about £65,000 so far.
“The only potential for a cure lies in ongoing research and clinical developments in the United States, which require significant private funding,” they said.
Dave and Siobhan SmithSmith said Rupert “has already endured more than most people will face in a lifetime”.
He said his son had previously been admitted to hospital six weeks ago, after he stopped breathing in another AHC-related episode.
The couple said that throughout everything, their baby was “so good natured” and “he just smiles all the time”.
“Between seizures he’ll come round and start smiling and, with his lovely big blue eyes, he just lights up the room,” said his mum.
“He continues to smile and that’s what gives us hope to keep going and do what we can for him and other children with this condition,” said Smith.
“It’s life-threatening, he can deteriorate so quickly without any warning.”
What is Alternating Hemiplegia of Childhood?
According to the NHS, Alternating Hemiplegia of Childhood is a condition that causes transient weakness of either, or both, sides of the body.
Charity AHC UK said it is an ultra-rare neurodevelopmental disease, which only affects one in a million.
The charity said: “AHC can present with any and every neurological symptom.
“It is like living with many different neurological diseases in one.”