Bengaluru doctors work across borders to obtain life-saving drug for teen with rare disorder
In an extraordinary display of medical commitment, Bengaluru doctors collaborated internationally to save 15-year-old Chinmayi K from a rare and life-threatening immune disorder, CHAPLE syndrome. Their efforts included securing a life-saving drug, Pozelimab, free of cost from a global pharmaceutical company.
Chinmayi, a Marathahalli resident, had suffered from severe diarrhoea, blood in the stool, and protein loss since infancy. Despite numerous treatments, his condition remained undiagnosed until genetic testing in 2021 confirmed CHAPLE syndrome, a disorder affecting fewer than 100 people worldwide.
Dr. Lavanya RP, a paediatric gastroenterologist at Rainbow Hospital, explained the initial misdiagnosis as Crohn's disease, leading to ineffective treatments. The breakthrough came when the medical team, led by Dr. Chandrika S Bhat, sought guidance from Dr. Ahmet Ozen in Turkey, an expert on CHAPLE syndrome.
Pozelimab, the only effective treatment for the disorder, is unavailable in India and costs approximately ₹1 crore for 24 vials. The team successfully persuaded the drug's manufacturer, Regeneron, to provide it free of charge under compassionate grounds after months of negotiations.
The results were transformative. "Within two months of starting Pozelimab, Chinmayi was symptom-free, off all medications, and experiencing no side effects," said Dr. Lavanya.
Chinmayi's father, Krishnamurthy, expressed gratitude for the medical team's efforts, noting the dramatic improvement in his son's quality of life. "He's now free from debilitating symptoms and no longer requires frequent hospital admissions," he said.
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South African police arrest suspect in mass shooting that killed 12, including 3 children
Johannesburg (AP): A 32-year-old suspect has been arrested in connection with a mass shooting which claimed the lives of 12 people including three children at an unlicensed pub earlier this month, South African police said on Monday.
The man is suspected of being one of the three people who opened fire on patrons in a pub at Saulsville township, west of South Africa's capital Pretoria, killing 12 people including three children aged 3, 12 and 16.
At least 13 people were also injured during the attack, whose motive remains unknown.
According to the police, the suspect was arrested on Sunday while traveling to Botlokwa in Limpopo province, more than 340 km from where the mass shooting took place on Dec 6.
An unlicensed firearm believed to have been used during the attack was recovered from the suspect's vehicle.
“The 32-year-old suspect was intercepted by Limpopo Tracking Team on the R101 Road in Westenburg precinct. During the arrest, the team recovered an unlicensed firearm, a hand gun, believed to have been used in the commission of the multiple murders. The firearm will be taken to the Forensic Science Laboratory for ballistic analysis,” police said in statement.
The suspect was arrested on the same day that another mass shooting at a pub took place in the Bekkersdal township, west of Johannesburg, in which nine people were killed and 10 wounded when unknown gunmen opened fire on patrons.
Police have since launched a search for the suspects.
South Africa has one of the highest homicide rates in the world and recorded more than 26,000 homicides in 2024 — an average of more than 70 a day. Firearms are by far the leading cause of death in homicides.
The country of 62 million people has relatively strict gun ownership laws, but many killings are committed with illegal guns, according to authorities.
According to police, mass shootings at unlicensed bars are becoming a serious problem. Police shut down more than 11,000 illegal taverns between April and September this year and arrested more than 18,000 people for involvement in illegal liquor sales.
