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From the first day of his life, little infant Adnan has suffered a seizure roughly every 13 minutes.
One can only imagine the reactions from his Dubai hospital bedside when, having received a still-experimental drug, his seizures stopped for the day.
And for the week, and the week after that—and the week after that.
The story comes via the Khaleej Times, which reported that the Dubai Health Authority (DHA) granted an application from King’s College Hospital London in Dubai through a “compassionate use” pathway for the use of a drug that is otherwise not approved for commercial use.
Called ABS-1230, the experimental oral medication targets abnormal activity in an ion channel associated with the “extremely rare” form of genetic epilepsy Adnan suffers from.
According to data from the treatment’s developer, Adnan is the youngest patient in the world to receive ABS-1230 and only the second infant to be given the experimental medication.
At the Dubai hospital, sequencing of Adnan’s entire genome revealed a gene variant associated with the seizures and allowed the medical team to identify ABS-1230 as a potential treatment option.
Led by Professor Ubaid Shah, consultant pediatric neurologist and epileptologist at the hospital, the drug was administered on September 14th. The success was so profound and immediate that Adnan was discharged from the hospital with his family just a week later, without a single seizure having been recorded during that time.
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“This is an exceptional moment for us, and it highlights what precision medicine can achieve when we are able to identify the genetic cause of a disease and choose a treatment that targets the mechanism linked to it,” Professor Shah told the Times.
Adnan suffered no clinical seizures at his October 11th follow-up. The hospital said he continues to be seizure-free as of November 2nd, and the infant is finally beginning to pass some early development milestones.
“Despite the encouraging response, we will continue to monitor his condition closely to assess whether the results are sustained and whether the experimental treatment is safe,” Professor Shah said.
Indeed, Shah and his colleagues stressed that the treatment is still experimental and requires more research before it can be approved for use by the public. That being said, however, Adnan’s response to it couldn’t have been more positive.
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