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Home / Health / Baby's Rare Disorder Sparks US Treatment Hope

Baby's Rare Disorder Sparks US Treatment Hope

20 Jan

•

Summary

  • A seven-month-old baby boy collapsed in a supermarket and stopped breathing.
  • The child has a rare neurological disorder called Alternating Hemiplegia of Childhood.
  • His family is fundraising for life-saving clinical trials in the United States.
Baby's Rare Disorder Sparks US Treatment Hope

A seven-month-old baby boy named Rupert Smith suffered a life-threatening medical emergency when he collapsed and stopped breathing at a Tesco store. The infant, who has a rare neurological disorder known as Alternating Hemiplegia of Childhood (AHC), was airlifted to Alder Hey Children's Hospital in Liverpool. His father, Dave Smith, reported that Rupert has continued to have significant seizures and is undergoing various tests, emphasizing that "he is not completely stable and out of the woods yet."

The family's ordeal began as they prepared to take Rupert for a hospital appointment. His mother, Siobhan Smith, immediately administered CPR before emergency services arrived. The incident at the Broughton Shopping Park on Monday required the supermarket's evacuation and temporary closure of the entrance by police. Mr. Smith, a police sergeant himself, expressed immense pride in his wife's quick actions and gratitude for the support from emergency services and NHS staff.

Due to the rarity of AHC, which affects approximately one in a million children and can manifest with a wide range of neurological symptoms, the family is seeking specialized treatment abroad. They have established a charity called Rupert's Rainbow to fund clinical trials and research in the United States, where the only potential for a cure lies. The couple has already raised approximately £65,000 towards their goal, driven by their son's resilience and constant smiles between seizures.

Disclaimer: This story has been auto-aggregated and auto-summarised by a computer program. This story has not been edited or created by the Feedzop team.
AHC is a rare neurodevelopmental disease causing temporary weakness on one or both sides of the body, presenting diverse neurological symptoms.
The family seeks specialized clinical trials and research in the United States, as these are the only potential avenues for a cure for Rupert's rare condition.
Rupert's Rainbow fundraises to support Rupert's participation in US clinical trials and to advance research into Alternating Hemiplegia of Childhood.

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