ISLAMABAD: The so-called ‘solar kids’, who have been suffering from a mystery ailment, came out disappointed from a meeting with President Mamnoon Hussain on Thursday. The family told Dawn that the president met with them for five minutes for a photo-op, and he left after giving the children a cricket bat, a tennis ball and a football.

The children’s father, Mohammad Hashim said he was excited to get an invitation to meet with the president.

“I thought he would announce some kind of [assistance] package for my children’s future and financial aid for the family, which did not happen,” he told Dawn.

Mr Hashim said he was surprised when the president just handed his children toys worth a few hundred rupees and left.

“I had heard that when the president calls a family which has been suffering in some way, he announces funds or other packages for them,” he said.

The children’s father said that the media had been a big help.

“All through the last month, various media groups have given us money, thanks to which I have been able to survive,” he said.

The case of the three children came to light when reports emerged of three brothers in a village in Balochistan who would wake up normal and full of energy in the morning and would lose energy as the day progressed, so much so that they would be completely paralysed by sun set, with the cycle repeating every day. Because they are only active during the day, villagers had nicknamed the children ‘solar kids’.

The two older boys have been moved to the Pakistan Institute of Medical Sciences (Pims) and the younger of the siblings affected by the disease, who is just a year old and has just started showing symptoms, is in the village with his mother.

The state minister for Capital Development and Administration Division (CADD) Dr Tariq Fazal Chaudhry paid a visit to the children in the hospital and announced that the government will be paying for the boys’ treatment, even if they were to be sent abroad.

The children’s father said his boys were being routinely tested.

“The children were given some medicines for two days because of which their condition had improved. But the medicines were then stopped because doctors said they have to be diagnosed first. Now, my children are paralysed by sun set again”, he said.

The brothers on the other hand, 13-year-old Mohammad Shoaib and nine-year-old Abdul Rasheed, seemed happy and were playing cricket in the grounds of the hospital with the bat given to them by the president. They were arguing with one another about who gets to play first.

A doctor at Pims said that though a president of the country is not bound to provide assistance to the people who come to visit him, presidents in the past including former dictator retired Gen Pervez Musharraf and Asif Ali Zardari would routinely announce financial assistance to patients at the hospital.

“The children come from a poor family. It would have been great help to the family if the president had even announced a few hundred thousand rupees for them”, he said.

Pims Vice Chancellor Dr Javed Akram, on the other hand, said that though the president had just spent a few minutes with the ‘solar kids’, he had called a “long” meeting to discuss their case in which the CADD minister had also participated.

“Genetic diseases were discussed in the meeting and the president suggested legislation for eradicating genetic diseases from the country”, he said.

He said that the president gave time to the kids should encourage doctors to focus more on diagnosing the disease.

Published in Dawn, May 13th, 2016