Sajan Shrestha – arupokhari Sajan Shrestha is a four-year-old boy with epilepsy who lives with his family in Arupokhari, Gorkha. Due to the lack of treatment he received when he was an infant, he is developmentally delayed. His mother, Sapana Shrestha, 19, had just turned 15 when he was born. The following interview is with her.
Where were you during the earthquake?
“I was folding clothes and putting things away. My baby was watching TV. He came behind me or something, I didn’t see him. We ran out and then later we brought him out. He was almost buried when we got him out and then the house fell. Nothing else happened. What else could happen? My house fell and that’s it.”
When the earthquake occurred, what did you think was happening?
“Don’t know. We didn’t feel anything. The house shook and there was dust.”
There is a lot of superstition in the village; community members are afraid to go near Sajan because they think that he is contagious and that they can “catch” epilepsy from him. In June of 2015, the grandmother took Sajan to Kathmandu for treatment and then to Chitwan; at the Chitwan Medical College he had an EEG and MRI- this is where they learned that the “brain is stressed” and that he has epilepsy.
“Everybody was worried. Neighbors said, ‘What will happen to this baby now? So take him to the hospital, do this, do that.’ I was so worried when he was sick.”
What else did you do during the attacks?
“What could I do? Sometimes I took him to the Jaakri (witch doctor) for treatments [sinke thokhyo] and he would feel better for some time. Then again the attacks would happen.”
And then what did the villagers say?
“What could they say? ‘Take him to the hospital, he won’t get well at home. You should take him to the hospital,’ they said.”
What happened to him while he was sick?
“His eyes would roll up and get white, and he would make fists and his mouth would foam.”
Sajan’s family is still not well informed about epilepsy and seizure first aid, but Sajan was given Sodium Valproate which he has to take twice a day (one in the morning and one at night); he has not had any ‘grand-mal’ seizures since he started to take the medication, but his grandmother notices that he becomes “spaced out” and loses consciousness at least twice a day (absence seizures).
The local village doctor, Dr. Sapkota, knows about Sajan’s condition and stocks up on the medication whenever he goes to the city so that way the family does not have to travel far; gives the family a huge discount on the medication and does home visits twice a month to make sure that everything is okay.
Is it because of the earthquake?
“Well…well…I don’t know. Is it because of the earthquake or who knows, who knows.”