North Wales Officer Seeks £1.5M for Son’s Rare Condition

A police officer from North Wales, Sergeant Dave Smith, has embarked on a poignant fundraising campaign to secure vital medical treatment for his seven-month-old son, Rupert. Diagnosed with an ultra-rare neurological disorder known as Alternating Hemiplegia of Childhood (AHC), Rupert’s condition necessitates a goal of £1.5 million to access essential therapies and clinical trials not available through the National Health Service (NHS).

Rupert’s condition, affecting approximately one in one million children globally, leads to unpredictable episodes of paralysis, seizures, and developmental delays. The implications of AHC are severe, with a notably increased risk of sudden death. Dave and his wife have noted that their son has faced more challenges in his brief life than many endure in a lifetime.

From just a few weeks of age, Rupert experienced seizure-like episodes that resulted in multiple hospital admissions. Extensive evaluations, including MRI and CT scans, EEGs, and genetic testing, have been carried out by specialist teams at Wrexham Maelor Hospital and Alder Hey Children’s Hospital. Tragically, their worst fears were confirmed when Rupert suffered a medical crisis that required urgent resuscitation.

“There is currently no cure,” Dave stated. “AHC is unpredictable and described by specialists as a time bomb. Episodes can come without warning and can last minutes, hours, or days.” This unpredictable nature significantly disrupts all aspects of Rupert’s daily life. He faces challenges such as low muscle tone and difficulty lifting his head, requiring ongoing care from various specialists, including neurology and physiotherapy.

The Smith family is now racing against time as research in the United States explores promising treatments such as antisense oligonucleotide therapy and genome editing. However, these therapies are not currently accessible in the UK and are projected to cost millions. To address this situation, the family has initiated the Rupert’s Rainbow campaign, aiming to raise the £1.5 million necessary for treatment, international travel, and support for global research into AHC.

“We need to be financially ready to act immediately if opportunities arise,” Dave emphasized. “For families like ours, delays can mean missing life-changing or life-saving chances.” The campaign also seeks to increase funding for AHC research worldwide, a condition that remains severely underfunded due to its rarity.

Rupert’s JustGiving page paints a picture of him as a “beautiful, happy, smiley little boy” who continues to radiate love despite his health challenges. “His smile is what gives us the strength to keep fighting,” his parents shared.

Dave is not new to fundraising efforts; he previously established Wrexham Police FC, a charity football team that raised nearly £60,000 for local causes and garnered support from notable figures, including actors Ryan Reynolds and Michael Sheen. In recognition of his community contributions, Dave was awarded the British Empire Medal in March 2024 and invited to a garden party at Buckingham Palace.

“I never imagined I would one day be asking for help for my own child,” he reflected. “But we have no other option. We are sharing Rupert’s story to give him the best possible chance at a future.”

While the family expresses deep gratitude for the NHS teams caring for Rupert, they stress the lack of curative treatment options in the UK. Those wishing to support the Rupert’s Rainbow campaign can donate or share the appeal to raise awareness for AHC and the urgent need for research. The JustGiving page for Rupert can be found at [JustGiving Link](https://www.justgiving.com/crowdfunding/ruperts-rainbowahc).