CHAKWAL: Six years ago, Mohammad Khan had vowed to provide his now 13-year-old son Ahmed Ali with the best education after Ahmed was declared the best student in his class at the local school in Bhagwal, some 40 km to the west of Chakwal city.

“I thought I would give him the best education, at any cost because I wanted to see him succeed,” said the 58-year-old farmer.

In 2011, Ahmed began suffering from headaches had pain in his head and suddenly could not speak or even blink. He was taken to the Holy Family Hospital (HFH) in Rawalpindi where he remained in a coma for two months.

HFH sent Ahmed to Shifa International Hospital as it lacked the facilities for diagnosing his condition.

Doctors at Shifa on Jan 13, 2012 said Ahmed may have Moyamoya disease, which is a progressive cerebrovascular disorder caused by blocked or constricted arteries at the base of the brain.

Mohammad Khan has since sold his land and cattle to afford his son’s treatment. “I took him to different hospitals, even to the Agha Khan Hospital, but in vain,” he said.

“This is a rare disease which was first diagnosed in Japan,” said Dr Saeed Ullah Shah, a consultant cardiologist at Shifa.

He added the condition exists in one or two of every 10,000 people. “We had never come across the disease in Pakistan before,” he said, explaining that the illness affects the veins which affects the blood circulation in the brain and that the veins in the heart are also affected.

Dr Shah said the disease is more prevalent in children though it can also affect adults.

“The disease is treated by medicines though surgeries are also possible but not yet in Pakistan as more work and research are required into this complicated disease,” he said.

The doctor said the illness is treated in the US but the treatment is very costly.

Turned away by many hospitals, Mohammad Khan now takes his son to Dr Mohammad Naeem, a retired Major General in Rawalpindi.

“I have to spend Rs15,000 on my son’s treatment every month. Doctors tell me proper treatment of the disease is only possible at the Boston Children Hospital and that it will cost me Rs300 million. I cannot even think of such a large amount,” he said.

Ahmed Ali cannot eat or drink without help and has no control of his limbs. His father feeds him via a tube.

“For six years now, he has only had milk in which I mix biscuits,” Mr Khan said.

Published in Dawn, May 5th, 2017