Indian expat student in Dubai, 7, dies of ultra-rare brain disorder during Kerala vacation

Dubai: A seven-year-old Indian expat student in the UAE has died after a sudden and ultra-rare neurological illness that affects one in a million children struck her during what was meant to be a happy summer vacation in her native Kerala.

Ameya Ajith, a Grade 1 student in Dubai and the only child to her parents, was enjoying her vacation with them when she fell ill and subsequently passed away on September 14, her grieving father confirmed to Gulf News.

According to her father Ajith KP, Ameya was hospitalised on August 1, a day after developing seizures. Despite weeks of treatment, she died of a cardiac arrest on Monday night, 45 days into her hospitalisation.

Her funeral was held in her hometown in Kerala on Tuesday.

A Dubai-based sales professional, Ajith said his daughter had shown no warning signs before the illness struck. "She had no symptoms earlier. She was a healthy, bright girl - more active than perhaps many children her age," he said.

During their holiday, the family celebrated Ameya’s seventh birthday on July 6.

Just weeks before the family left for their holiday, Ameya had another small celebration with her friends at her dance school in Dubai.

She had remained fine and enjoyed the first few weeks of her vacation. Her symptoms began on July 31, with seizures that led to her hospitalisation the very next day.

Doctors diagnosed her with Febrile Infection-Related Epilepsy syndrome, or FIRES, a rare and severe form of epilepsy.

"Her condition could not be controlled by medicines. It affected her neurologically and led to further complications. It is rarely seen and barely reported," Ajith said, adding that the disease can vary greatly from one child to another.

Febrile Infection-Related Epilepsy Syndrome is a catastrophic epileptic condition that strikes previously healthy children, typically between the ages of three and 15, and its exact cause remains unknown, with very few effective treatments available.

It usually begins with what looks like an ordinary fever or infection, which is then followed by an explosive onset of severe, drug-resistant seizures that can last weeks or even months.

The condition is extremely rare, affecting roughly one in a million children, and carries a mortality rate of around 12 per cent. Survivors often go on to develop long-term seizures and intellectual difficulties.

Doctors and researchers worldwide are still trying to understand what triggers the illness, and treatment largely focuses on managing symptoms rather than curing the disease.

"Her seizures were brought under control within two to three weeks," Ajith said. But the relief was short-lived.

According to Ajith, doctors gave Ameya immunotherapy - treatment aimed at calming an immune system that, in this condition, is believed to mistakenly attack the body itself.

He said this, in turn, weakened her immunity and left her vulnerable to infections.

Ameya then began having uncontrollable movements, which delayed further treatment. She was moved to the intensive care unit and placed on a ventilator, under constant sedation.

"She was not conscious. But, we were hoping she would be out of the ICU within a week or two. That is when she suffered a cardiac arrest, completely unexpectedly," the father said.

Her mother, Meera Ajith, has been left devastated, he added.

Meera had previously worked in digital marketing but took a career break a year ago to spend more time with her daughter and support her passion for dance and acting, as well as her studies.

Ameya was a student at Shamna Kasim Dance Studio in Dubai, run by Malayalam actress and dancer Shamna Kasim.

Following news of her death, Shamna shared an emotional tribute to her young student on Instagram.

"There is only a pain that even tears cannot fully express. This little angel was a beloved student of our Shamna Kasim Dance Studio," she wrote, describing Ameya's "tiny footsteps," her "innocent smile" and her "loving face," which she said would remain in every corner of the studio.

"You were not just a student to us, dear... you were a cherished member of our family. The emptiness you have left behind can never be filled by anyone else. As long as Shamna Kasim and Shamna Kasim Dance Studio exist, you will continue to live forever in our hearts and memories," she added, signing off with a "tearful tribute" to her former student.