Monday, June 20, 2016

There are few who wait as wistfully for the sun as Shoaib, Rashid and Ilyas — three children hailing from a Balochistan village which is stunned by their mysterious illness.

Residents of Mian Kundi, a village some 15 kilometres from Quetta, the children aged one, nine and 13 are forced into stillness when it sets, and anxiously wait for it to come up again the next day.

At 4am, they rise with the first rays, filled with energy and life. As the sun travels west, their strength appears to deplete, and by the time it sets, they are completely paralysed.

Around sunset, the boys start to lose their energy and retreat to their beds.

According to the Pakistan Institute of Medical Sciences (Pims) Chancellor Dr Javed Akram, theirs is the first reported case of such an illness across the world. “It is a challenging puzzle for medical science to solve,” Akram says: bodies synced to the movement of the sun.

The naming

Hashim, a security guard at IT University Quetta, says his sons were born like this. It wasn’t an anomaly or habit formed later in life; from the very first day, he says their bodies appeared to be dependent on sunlight. When villagers heard about them, they were amazed, and they were christened ‘solar kids’.

But not all of his kids have earned that title. Hashim, who married his first cousin, have three more children -- two girls and a boy -- who have escaped the peculiar condition.

He says his town is disease-free, and all basic modern facilities like electricity, phone and gas are available. People live a healthy, normal life, as most places in the country. “We are not a backward village,” he clarifies, lest people attribute the roots of the disease back to his hometown.
They rise with the first rays, filled with energy and life. As the sun travels west, their strength appears to deplete.

When one observes them closely, the boys' daily activities appear normal. The children wake up early, sometimes before sunrise, and are energetic.

After attending classes at a seminary, they play cricket with their friends and spend time with their siblings. When they can, they help their father out with his part-time livestock farming, tending to the sheep and goats.

“They don’t really complain,” Hashim says, “They enjoy doing everything they are told to.”

The older two are particularly keen about their studies and idolise their teacher 'Maulvi Sahab'. Shoaib wants to excel in religious studies and Rashid wants to become a Hafiz-e-Quran.

But despite the ordinariness of they daytime routine, they live with a constant nagging that their time is limited till late afternoon. As the sunlight fades, the three boys seem to grow lazy. By the time the sun disappears, their energies are totally drained.

No textbook solutions

Akram claims he has never heard of the condition. “It is a peculiar disease which pushes children into a vegetative state after sunset,” he explains. “We have taken it up as a research project.”

His team is working with a team of 27 Pakistanis and 13 international members to solve the case. He hopes to treat the mysterious illness, but first, they have to make a successful diagnosis.

Pims has already sent blood samples and test reports to thirteen international collaborators, including Mayo Clinic and John Hopkins Medical Institute in the US, and Guys Hospital in London. Hundreds of tests have been carried out, but to no avail.

We are lucky their illness has not worsened with time.
Hashim, the children's father

Meanwhile, a team is busy in Mian Kundi village, gathering environmental samples from sand and water.

Hashim is aware of the efforts underway to cure his sons, and considers them fortunate. 

“We’re lucky their illness has not worsened with time,” he notes. He adds that the boys are frustrated with their physical limitations. It is a strange thing for a father to watch.

“They know it will happen,” Hashim says, "So they keep an eye on the sun’s movements. Their bodies and mind have been trained to complete their tasks in time for bed at sunset."

At times, Hashim feels their activity is more 'time-bound' than 'sunlight-bound'. “In the case of thick clouds or rain, their routine doesn’t change,” Hashim explains. “Often,whether the sun is visible or not, they start shutting down in the evening.”

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