ISLAMABAD: At 4am on the dot, Shoaib and his two brothers rise with the first rays of the sun, but towards sunset their energy levels deplete and by sundown they are left completely paralysed.
The brothers, who live in Mian Kundi village nearly 15 kilometres from Quetta, were born with a mysterious condition which forces their bodies into stillness as the sun goes down every day.
The boys aged one, nine and 13, according to their father Hashim, were born this way.
“It wasn’t an anomaly or habit formed later in life,” he said. “From the very day they were born, their bodies appeared to be dependent on sunlight.”
According to Pakistan Institute of Medical Sciences (Pims) Chancellor Dr Javed Akram, this is the first reported case of such an illness across the world. “It is a challenging puzzle for medical science to solve,” said Dr Akram, adding that their bodies seemed to be synced to the movement of the sun.
Hashim, who works as a security guard at the Balochistan University of Information Technology, Engineering and Management Sciences in Quetta, says when the villagers heard about his sons’ condition, they started calling them “solar kids”.
However, Hashim explained, not all of his children suffer from this peculiar illness. Hashim, who is married to his first cousin, has three other children — two girls and a boy — who unlike their brothers are not dependent on the sun.
According to Hashim, his village is disease-free and has all the basic facilities such as electricity, phone and gas. “People live a healthy and normal life here,” he said.
The boys’ daily routine, their father explained, is quite normal. “The children wake up early and are energetic,” he said, adding that they attend classes at their seminary, play cricket with their friends and spend time with the family.
When they can, Hashim said, they help him with livestock farming and tending to the sheep and goats.
“They don’t really complain,” he said, adding that they enjoyed doing everything.
Shoaib, 13, and nine-year-old Rashid are particularly keen about their studies and idolise their Quran teacher. According to their father, Shoaib wants to excel in religious studies while Rashid wants to become a Hafiz-i-Quran.
Despite the ordinariness of their daily routine, the three brothers live in constant misery knowing that their time is limited to late in the afternoon as they know they will start feeling drained as soon as the sun starts to set.
Finding a solution
Dr Akram claims that he has never heard of this condition. “It is a peculiar disease which pushes children into a vegetative state after sunset,” he explained. “We have taken it up as a research project.”
He is currently working with a team of 40 doctors and researchers to figure out what is going on in the boys’ bodies. He hopes to treat the children after making a successful diagnosis.
Pims has already sent blood samples and test reports to 13 international collaborators, including the Mayo Clinic and John Hopkins Medical Institute in the US, and Guys Hospital in London. Hundreds of tests have been carried out so far but to no avail.
Meanwhile in the village, a team is busy gathering environmental samples.
Hashim is aware of the efforts being made to cure his sons, and considers them fortunate. “We’re lucky their illness has not worsened with time,” he said, adding that the boys were upset with their physical limitations.
“It is a strange thing for a father to watch,” he said. “They know what will happen to their bodies so they keep an eye on the sun. They have trained themselves to complete all tasks before bed.”He added that he felt their activities were more time-bound than by the sun, “in case of rain or storm, their routine doesn’t change”.
Published in Dawn, May 5th, 2016