How Did a Mum Save Her Baby with a Rare Condition During a Tesco Seizure?

A seven-month-old baby named Rupert Smith, who suffers from the rare neurological disorder Alternating Hemiplegia of Childhood (AHC), was airlifted to Alder Hey Children's Hospital in Liverpool after collapsing in a Tesco store in Broughton, Flintshire. His father, Dave Smith, has reported that Rupert is not yet "out of the woods," as he continues to experience significant seizures and requires ongoing medical attention.

Last updated: 22 October 2023 (BST)

What’s happening now

Rupert Smith remains in a critical condition following a medical emergency at a supermarket on 16 October 2023. His father confirmed that while Rupert has undergone various tests and is receiving medication for his seizures, he is still facing significant health challenges. The family is relying on the support of NHS staff and is actively fundraising for treatment options not available in the UK.

Key takeaways

Rupert Smith is receiving treatment at Alder Hey Children's Hospital after collapsing in a Tesco store.
He suffers from Alternating Hemiplegia of Childhood (AHC), a rare neurological disorder.
The family is fundraising to access clinical trials in the United States.

Timeline: how we got here

Rupert's recent health crisis began on 16 October 2023, when he collapsed in a Tesco store at around 10:35 GMT. His parents noticed he had stopped breathing and quickly called for help. Emergency services arrived promptly, taking Rupert to Alder Hey Children's Hospital. Prior to this incident, Rupert had already been hospitalised six weeks earlier due to an AHC-related episode.

What’s new vs what’s known

New today/this week

Rupert was airlifted to hospital following a seizure at a supermarket, prompting his parents to call for urgent help. His father has expressed concerns about Rupert's ongoing health challenges and the limitations of treatments available in the UK.

What was already established

Rupert suffers from AHC, a rare condition affecting approximately one in a million children. The disorder leads to episodes of paralysis, seizures, and other neurological symptoms, which can occur without warning.

Impact for the UK

Consumers and households

This incident highlights the urgent need for accessible and effective treatments for rare disorders such as AHC in the UK. Families facing similar challenges may experience heightened anxiety about the availability of specialised care and the potential for medical emergencies.

Businesses and jobs

Local businesses, such as the Tesco store where Rupert collapsed, may face scrutiny regarding customer safety. Additionally, the case has led to increased community awareness and support for rare disease research and funding initiatives.

Policy and regulation

Rupert's situation has brought attention to the limitations within the NHS concerning rare diseases. Advocacy for increased funding and research into conditions like AHC may prompt discussions among policymakers to improve access to treatment options.

Numbers that matter

£65,000: Amount raised by the Smith family for Rupert's treatment and research into AHC.
1 in 1,000,000: The estimated incidence rate of Alternating Hemiplegia of Childhood.
6 weeks: The time between Rupert's two hospital admissions for AHC-related episodes.

Definitions and jargon buster

Alternating Hemiplegia of Childhood (AHC): A rare neurological disorder characterised by episodes of paralysis affecting one or both sides of the body.
CPR: Cardiopulmonary resuscitation, a lifesaving technique used in emergencies when someone's breathing or heartbeat has stopped.

How to think about the next steps

Near term (0–4 weeks)

Rupert's family will continue to monitor his condition closely while seeking further treatment options and support from the NHS and community fundraising efforts.

Medium term (1–6 months)

The Smith family aims to secure funding for clinical trials in the US, which may provide access to innovative treatments for AHC.

Signals to watch

Updates on Rupert's health and treatment progress from the family.
Fundraising milestones and events for Rupert's Rainbow charity.
New developments in clinical research for AHC and related disorders.

Practical guidance

Do

Stay informed about rare neurological disorders and available treatments.
Support families in similar situations through fundraising and awareness initiatives.

Don’t

Ignore the importance of early intervention in medical emergencies.
Overlook the need for continued research into rare conditions like AHC.

Checklist

Understand the signs of seizures and how to respond appropriately.
Know how to administer CPR and when to call emergency services.
Get involved in local or online fundraising initiatives for rare diseases.

Risks, caveats, and uncertainties

While the Smith family is actively seeking treatment options for Rupert, the complexities of AHC mean that responses to various treatments can vary significantly. The ongoing research into this disorder is crucial, but there is no guarantee that any specific treatment will be effective.

Bottom line

Rupert Smith's situation underscores the challenges faced by families dealing with rare neurological disorders. His family's efforts to raise awareness and funds for treatment reflect a growing need for improved resources and support for those affected by conditions like AHC. Continued advocacy and research are vital for creating a brighter future for Rupert and others like him.

FAQs

What is Alternating Hemiplegia of Childhood (AHC)?

AHC is a rare neurological disorder that causes episodes of paralysis and other neurological symptoms, affecting approximately one in a million children.

How can I help families like the Smiths?

Support can be provided through donations to charities focused on rare diseases, participating in fundraising events, or raising awareness about the challenges these families face.

What are the treatment options for AHC?

Treatment options for AHC are limited, and families often seek specialised care and clinical trials, particularly in the US, where more research is being conducted.