ISLAMABAD: After nearly three weeks in the federal capital, the ‘solar kids’ have returned to Balochistan.

Mohammad Hashim, the father of the three paralysed children, seemed disappointed upon his return because the family was not suggested any medication that could help treat his children.

However, the management of the Pakistan Institute of Medical Sciences (Pims) said it could take another six to eight weeks to begin medication, because samples for DNA analysis have been sent to the United States and the process can take over six weeks.

The ‘solar kids’ came into the limelight after three siblings in a village in Balochistan began displaying peculiar symptoms. The children would wake up energetic and early, but would lose energy throughout the day and end up paralysed by sunset.

Family was told to return home until DNA analysis report is sent to Pims, which could take six to eight weeks

The villagers coined the term ‘solar kids’. The children who came to Pims for treatment are Mohammad Shoaib, 13, and Abdul Rasheed, 9.

Their one-year-old brother, Mohammad Ilyas, stayed at home because he could not come without his mother.

Doctors initially believed the children were suffering from congenital masthenia syndrome (MS), a rare disease of which only 600 cases have been reported in the world. Most of the reported cases have been in Europe and north Africa.

A medical board of 19 doctors conducted 232 tests on the children. While their’s could be the first case of MS to be reported in Pakistan, it is expected that children are suffering from something else.

During their first ever visit to the capital, the children also met with President Mamnoon Hussain at the presidency, and later, Rs50,000 was announced for them by the Pakistan Baitul Mal (PBM).

Mr Hashim told Dawn that after their almost three-week stay in Islamabad, Pims officials suggested they return to Quetta, as it could take time until they receive the test reports.

“Although I have come to Quetta, I still cannot understand why medicine wasn’t suggested for my children. During our stay at Pims, the children were given medicine for two days because of which they were totally normal, but then the medicine was stopped and I was told it was just given as an experiment,” he said.

“The doctors at Pims said they would call me as soon as they get the report, but I’m not sure that they will. But I will visit Islamabad again if they call me.”

When asked, Mr Hashim said his children’s condition had not changed, and they were paralysed in the evening time.

“They have started going to the seminary that they used to go to before visiting Islamabad,” he added.

He said a team of doctors from Quetta also visited his home to see the children, but did not suggest any medication. “[They] said they would contact the Pims administration if there was any need to start some medicine,” he said.

In response to a question, Mr Hashim said PBM had given him a cheque, but it was a crossed cheque and he wasn’t sure if it could be cashed in Quetta.

“I will contact the bank in Quetta city to find out if I can get the money in Quetta, or if I will have to come to Islamabad,” he said.

According to Pims spokesperson Dr Ayesha Isani, renowned molecular biologist Dr Riazuddin has taken blood samples to the University of Maryland, Washington DC.

“It will take six to eight weeks to get the report, and after that the Pims medical board will be in a position to suggest medicine for the children. Moreover, after getting the DNA analysis report the DNA analysis of the rest of the family will be done in Pakistan,” she said.

Dr Isani said that the children were given Sineset during a two-day trial, to test for the full spectrum of muscle diseases, and see how the muscles respond.

“Because of the medicine we have confirmed that the muscles of the children were responding,” she said.

In response to a question, Dr Isani said the medication cannot be provided to the children without confirmation of the disease.

“After the DNA analysis report arrives, special medicine will be suggested and the children will be called to Pims. It is necessary to call the children back to Pims because we have to see if the medicine will be effective and if there will be any need to increase the dosage,” she said.

“It could be a new disease in Pakistan, or maybe in the whole world, so we will give the patients and the disease proper attention. The children’s family and their relatives will also be scanned to determine the possibility of more cases within the family,” she said.

Published in Dawn, May 30th, 2016