Flintshire police officer launches £1.5m appeal to save son with ultra-rare condition
A North Wales police officer who has spent years raising money for others is now fighting for the life of his own son.
Sergeant Dave Smith, from Broughton, has launched a £1.5 million fundraising campaign after his seven-month-old son Rupert was diagnosed with an ultra-rare and life-threatening neurological condition.
Rupert has Alternating Hemiplegia of Childhood (AHC), a genetic disorder affecting around one in one million children worldwide.
The condition causes unpredictable episodes of paralysis, seizures, breathing difficulties and developmental delay, and is associated with a significantly increased risk of sudden death.
Dave and his wife say their son has already endured more in seven months than many people face in a lifetime.
From just a few weeks old, Rupert began suffering seizure-like episodes, leading to repeated hospital admissions.
He has undergone extensive testing, including MRI and CT scans, EEGs, lumbar punctures and genetic analysis, under specialist teams at Wrexham Maelor Hospital and Alder Hey Children’s Hospital.
Their worst fear became reality when Rupert suffered a medical emergency and stopped breathing, requiring urgent resuscitation.
Genetic testing later confirmed the devastating diagnosis.
“There is currently no cure,” Dave said. “AHC is unpredictable and described by specialists as a time bomb. Episodes can come without warning and can last minutes, hours or days.”
Rupert’s condition affects every part of daily life. He has low muscle tone, struggles to lift his head, and is under the care of neurology, respiratory, physiotherapy, dietetics and speech and language specialists.
Triggers for episodes include temperature changes, excitement, stress, water exposure, lighting and even food.
Now, his parents are racing against time.
Research into AHC is underway in the United States, with promising emerging treatments including antisense oligonucleotide therapy and genome editing. However, these treatments are not available through the NHS and are expected to cost millions of pounds.
The family has launched Rupert’s Rainbow, a fundraising and awareness campaign aiming to raise £1.5 million to fund future treatment, clinical trials, international travel and accommodation, and to support global research into the condition.
“We need to be financially ready to act immediately if opportunities arise,” Dave said. “For families like ours, delays can mean missing life-changing or life-saving chances.”
The campaign also aims to accelerate research for all children affected by AHC worldwide, a condition that remains severely underfunded due to its rarity.
Rupert’s JustGiving page describes him as a “beautiful, happy, smiley little boy” who continues to greet the world with love, despite his fragile health.
“His smile is what gives us the strength to keep fighting,” his parents wrote.
Dave is no stranger to fundraising. He previously founded Wrexham Police FC, a charity football team that raised close to £60,000 for local causes and attracted support from Ryan Reynolds, Rob McElhenney and Michael Sheen.
In 2024, he was awarded the British Empire Medal for services to the community and charity and was invited to a Buckingham Palace garden party hosted by the King and Queen.
“I never imagined I would one day be asking for help for my own child,” he said. “But we have no other option. We are sharing Rupert’s story to give him the best possible chance at a future.”
The family say they remain deeply grateful to the NHS teams caring for Rupert, but stress that there is currently no curative treatment available in the UK.
Anyone wishing to support Rupert’s Rainbow can donate or share the appeal to help raise awareness of AHC and the urgent need for research.
A Just Giving page has been set up for Rupert, you can donate here: https://www.justgiving.com/crowdfunding/ruperts-rainbowahc
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