Two-year-old Aurora Bryant-Saunders's smile hides a terrifying reality: the coming heatwave could kill her. Last month, temperatures soaring to 37.3 degrees Celsius triggered a red alert in parts of the UK, forcing her parents to spend £1,200 to move the family—including her seven-year-old sister Bea—into an air-conditioned flat in central Manchester.
Life-Threatening Heat Sensitivity
Aurora has an ultra-rare genetic form of epilepsy known as PCDH19, affecting just three in every million people. Her mother, Allie Saunders, explains: "Aurora struggles to control her core temperature. When the heat gets to a point you or I would find uncomfortable, her body's natural reaction is to go into seizures. She starts to struggle around 25-27 degrees."
When the temperature in her bedroom exceeded 33 degrees, the family had no choice but to flee to an air-conditioned apartment. Allie says: "Degrees are a matter of life and death. The four-day heatwave cost us over £1,200—but it could have cost us Aurora's life."
Daily Seizures and Triggers
Doctors believe Aurora's condition was triggered by a cold at two months old. "The first two months of her life were normal. Then she got a cold and began to seize. The seizures have continued ever since. She has them daily, but we manage them with medication given every 12 hours," Allie says. Certain triggers include infections, viruses like common colds, teething, and heat. Even with an expensive fan, the temperature in her room reached 33 degrees last week, causing seizures.
Knowing the seizures were becoming dangerous, Allie and her partner Ross Bryant, 34, a drinks specialist, had no option but to move out. "All the affordable air conditioning units in the country had sold out. Going outside was out of the question, apart from at night. We had no choice but to check into an air-conditioned apartment in town. It was life or death," Allie says.
A Normal Toddler in Cooler Times
Day to day, Aurora is much like any other toddler. "She is a happy, loving, funny little girl. She loves playing with cars and her favourite song is 'row row row your boat,' because she thinks it's about her. When it's not boiling hot in the UK, she lives a pretty normal life with us, going swimming and having playdates with her friends," Allie says.
After her first seizure, doctors initially thought it was ordinary epilepsy or febrile convulsions, which children often grow out of. But seizures continued, and two months later, a senior neurologist at Royal Manchester Children's Hospital (RMCH) witnessed an episode, rushed genetic testing, and diagnosed Aurora with PCDH19. Allie explains: "It predominantly shows up in girls and neither parent needs to be a carrier of the gene—we aren't. It can't be cured with gene therapy and surgery would have no effect, as it occurs in her entire brain. She won't grow out of it like some childhood epilepsy; this is for life."
Uncertain Future and Family Support
Aurora's future is uncertain. She has regular seizures managed with medication and a seizure plan that allows home management by increasing dosage. When that fails, she goes to hospital for IV meds, typically for a few days every three months. The family has been supported by medical teams at RMCH and Roald Dahl's children's charity.
Allie describes Aurora as a "joyful little girl" who can walk, albeit wobbly, and has learned a few words: "'Bread stick', 'naughty' and 'hi' are her favourites, but her first word was 'Nini'—her neurologist's name. As she grows, she'll most likely be autistic. There's a high possibility of regression when she has severe seizures that may affect her ability to walk, speak and feed herself."
Her sister Bea is a great support. "Bea's a great big sister and is very protective. Their age gap helps and we try to make sure that Bea gets enough time with us all. We are so incredibly proud of Aurora. With the right care, she should be able to live a long and happy life. But avoiding her triggers is hard, especially heat, as we can't control the weather—and the UK is getting hotter and hotter."
Financial Strain and Full-Time Care
Caring for Aurora is a full-time job. Ross had to give up his job due to lack of flexibility for emergencies. Allie runs her own business but struggles. They pay for a specialised nanny costing £20,000 in the last year to allow them to work and get respite. For the first few years, Aurora couldn't attend nursery due to one-to-one care needs. Now approved, they cannot find a suitable nursery place.
Money is tight. "There's a cost of living crisis, we can't afford to pay £1,200 to stay in a hotel every time it's hot. We haven't even paid rent yet, because we can't. And it's only July. Summer has only just begun," Allie says.
Raising Awareness and Hope
Allie hopes sharing their story helps other parents feel less alone. "We wouldn't want to change Aurora, but the UK infrastructure isn't built for children and families with disabilities. The thing about Aurora is that she's fine, until she's not. The idea that she could have died last week because it was hotter than usual, really scared us."
Fearing another heatwave, Allie and Ross launched a GoFundMe page to cover future emergency accommodation and treatment, including physiotherapy. They hope pioneering gene therapy in development will alleviate Aurora's condition. "There are advances in medicine all the time, and we're keen to raise as much awareness of PCDH19 as possible, to hopefully secure more funding for gene therapy research," Allie says.
The family has now bought an air conditioning unit for Aurora's bedroom. "When the temperature hots up, we'll retreat to her bedroom. But it's not exactly sustainable. If these heatwaves really are the new normal, we'll have to move away. We've spoken about Scotland, because at least it tends to be a bit cooler. For most people, 33 degrees is picnic weather. But for Aurora, it could be a death sentence."
What is PCDH19?
PCDH19 refers to a gene on the X chromosome that provides instructions for making a protein involved in cell-to-cell adhesion and signalling in the brain. Pathogenic variants in this gene cause PCDH19-related epilepsy, a rare childhood-onset disorder primarily affecting females. The hallmark is brief, recurrent clusters of seizures, often triggered by fever, illness, or heat.
