This archive report was first published on 23 August 2020.
On November 10, 2018, Veronica Njeri Kahungura's life took a dramatic turn when her son Ethan fell unconscious at home. The incident marked the beginning of a long and arduous journey to find medical help for Ethan's epilepsy, which would eventually take the family to India and lead to a letter to President Uhuru Kenyatta.
Veronica, a customer service consultant, recounts the events that unfolded in the days and weeks that followed. 'I was not at peace that day,' she says. 'I went on with my duties, but my mind was elsewhere.' It was only when her son's nanny called to say Ethan was unconscious that Veronica's world came crashing down.
After a series of tests and scans, doctors at Mater Hospital in Nairobi diagnosed Ethan with tonsillitis and recommended surgery to remove his adenoids and tonsils. However, a second opinion from a neurologist suggested that surgery might not be the solution, and that Ethan's seizures were likely caused by a brain issue.
As the seizures continued, Veronica became increasingly desperate. 'I had to see my son go into seizure three to five times in a day,' she says. 'It was terrifying to watch.' After three months of trying various treatments in Kenya, the family decided to seek help in India, where they had heard of a hospital that had successfully treated a child with similar symptoms.
After fundraising drives, the family traveled to India on March 2, 2019, and spent two months at a hospital in Mumbai. Although Ethan's seizures did decrease, his condition began to deteriorate, and he started losing his speech and cognitive abilities. The family returned to Kenya, but it was clear that Ethan needed more specialized care.
With the help of friends and family, Veronica raised funds to take Ethan back to India for a more permanent solution. This time, they traveled to New Delhi, where a doctor recommended VNS surgery, which would cost Sh3.5 million. With no money to pay for the surgery, Veronica was forced to return to Kenya, but she refused to give up.
It was then that she decided to write a letter to President Uhuru Kenyatta, which was carried by a few media outlets. The letter and a photo of Ethan holding a pencil sparked a response from the Indian embassy, which had initially told Veronica that they couldn't help her. The ambassador called her back, and the rest, as they say, is history.
