This archive report was first published on 22 August 2020.
On November 10, 2018, Veronica Njeri Kahungura's life turned upside down when her son Ethan fell unconscious at home. The incident marked the beginning of a long and arduous journey to find a cure for Ethan's epilepsy.
Veronica, a customer service consultant, is best known to Kenyans as 'Mama Ethan' after a funds drive to settle her son's medical bills. In an interview with GARDY CHACHA, she narrated her son's story, which has been a rollercoaster of hospital visits, medication, and fundraising efforts.
After Ethan's initial fall, Veronica rushed him to a nearby hospital, where he was later transferred to Mater Hospital in South B, Nairobi. The doctors advised that he be transferred for specialized treatment, and he was eventually admitted at Mater Hospital for 10 days. During his stay, Ethan had three more seizures and was put on anti-convulsants. A date for surgery was set, but Veronica was not convinced that surgery was the right solution.
Seeking a second opinion, Veronica visited a neurologist along Ngong road, who analyzed the case and said that surgery to remove adenoids wouldn't solve the problem since the problematic part was in the brain. After a whole day at the clinic, they headed home around midnight, only to find Ethan having another seizure. This trend continued, with the seizure interval growing smaller and smaller.
As a parent, Veronica felt helpless watching her son suffer from chronic illness. In her words, 'You do not want to see your child chronically ill. The helplessness feels horrible.' After innumerable trips to doctors and hospitals, Veronica decided that nothing in Kenya was working, and Ethan was getting worse. At some point, he was on nine drugs, which left him practically a 'zombie.'
Desperate for a solution, Veronica began researching online and met a lady whose child also developed seizures from a fall. They had gone to India and come back better, and Veronica hoped to replicate those results with Ethan. After fundraising drives, they traveled to India on March 2, 2019, and stayed there for two months. Although the seizures had gone down a little, Ethan's condition began deteriorating fast, and he lost his speech and cognitive abilities.
Veronica needed to take Ethan back to India for a more permanent solution, and thus began another round of fundraising. She sent Ethan's doctor in India videos of what was happening, and the doctor recommended that they get an EEG test done. The test showed abnormally high electrical activity, and the doctor in India floated a few options, including VNS surgery, Corpus-callosotomy, and a surgery to remove the part of the brain where the electrical activities emerged from.
With money from fundraising coming in trickle by trickle, Veronica traveled to India in February 2020, where they changed hospitals and went to one in New Delhi. The doctor they saw performed more tests and recommended the VNS surgery, which cost Sh3.5 million. Veronica did not have the money, but she was working with faith, and she told the doctor that they would be back in a week's time with the money.
Back in Kenya, friends and family were working hard to raise money for Veronica and Ethan. She called the Kenyan embassy in India and asked for help, but they responded that they didn't have money to fund cases like hers. Desperate, Veronica considered writing a letter to the president, and she did. The letter and a press release were sent to media houses, and one Friday, after doing laundry, Veronica checked her phone and saw many missed calls from an Indian number. It was the embassy, and they told her that the ambassador would be in touch.
