ISLAMABAD: Arrangements to treat the children with a rare disease, in which they wake up active and are paralysed by sunset every day, have been finalised by the Pakistan Institute of Medical Sciences (Pims).

A nine member board has also been formed to conduct tests, samples of which may also be sent to the United States for diagnosis.

Doctors believe that the three children, all from the same family, may be suffering from a congenital disease called Masthenia Syndrome, or MS for short, which is a rare illness with 600 cases reported all over the world so far.

‘Solar kids’ who wake up active, are paralysed by evening may be suffering from a disease with only 600 reported cases worldwide

Last week, the case of three children of the same family in a village near Khuzdar in Balochistan came to light when they were reported to wake up active in the morning but were said to lose energy as the day progressed and end up paralysed by sunset, with the cycle repeating every day.

The siblings have been named as 14-year-old Shoaib Hashim, nine-year-old Rasheed Hashim and Ilyas Hashim who is just a year old. Because they only remain active during the day, villagers have named the children ‘solar kids’.

Since Pims is researching into genetic diseases, and with this being the first reported case in Pakistan, it was decided to move the children to Pims. Shoaib and Rasheed have been moved to a Pims Satellite Lab in Lahore and all the siblings will be moved to Islamabad on Saturday.

Family members accompanying the children will be staying at the Mehman Khana and their boarding expenses will be borne by Pims while three beds have been reserved for the brothers at the Children Hospital.

Talking to Dawn, Molecular Biologist Prof Dr Riazuddin said he thought the three children were suffering from MS.

“This disease makes the nerves weak because of which a patient wakes up normal, but within a few hours, the nerves become so fatigued that the patient becomes paralysed. It is all because of a disturbance in the neurological system,” he explained.

He said that MS is a very rare disease with an occurrence rate of one in 2.5 million families. He said that of the 600 reported cases, most have been from Europe and North Africa.

“This is the first reported case in Pakistan, which is why we are giving so much attention to it,” he said.

“I think the parents would have one MS gene each, which is why they are not affected by MS though they are carriers. But their children are affected because they now have two MS genes, one from either parent,” he said.

The doctor said that the parents are cousins, which means the MS gene runs in the family, but he hastened to add that MS is not caused by marriages between cousins and that occurrences occur only if two MS carriers reproduce. He said that screening for genetic diseases is important before marriages between cousins.

“Right now, only the two older siblings are affected by the disease, and the one-year-old is not yet showing symptoms, but it is only a matter of time before he also faces problems”, he added.

Tests for nerve strength will also be carried out now, along with others in order to confirm MS and how far it has progressed, he said.

Pims Vice Chancellor Dr Javed Akram told Dawn that it was decided to move the children to Pims because the hospital has experience in working on genetic diseases.

“The boys’ father is a farmer and he cannot afford expensive treatments and travelling, so it was decided that Pims will bear all the costs and after treatment and family profiling, a research study will be carried out, the findings of which will be shared with other hospitals and other medical institutions,” he said.

The vice chancellor suggested that the government should mandate the medical screening of every child after birth, much like the Sindh government has.

“In the past, infectious diseases were more focused on, but in the future, genetic diseases will be given more attention due to which we will know at what age a patient will begin showing symptoms if he has a genetic disease. This is called neonatal screening,” he added.

The medical board constituted for the ‘solar kids’ includes Dr Javed Akram, Prof Dr Moazzam Nazeer Tarar, Prof Dr S. Riazuddin, Prof Dr Tayyab Husnain, Dr Muhammad Asif Naeem, Dr Muhammad Rauf Ahmad, Dr Mohsin Shahzad and Dr Zaman Khan.

Published in Dawn, April 28th, 2016