The little boy’s growth is severely delayed as he suffers from Maple Syrup Urine Disease (MSUD) – a genetic disorder which affects one in 1,85,000 newborns in the world.
Because of his condition Baby Haadi can have only a low-protein diet; which means he cannot have milk, egg, meat or any other protein-rich food. The lack of protein has delayed his physical and mental growth.
“If we don’t calculate the right amount of protein in his diet, he may even die. He needs to take routine protein level tests. Once we send his samples to Bangalore, the result takes almost 15 days,” says Misbah, his mother.
After much research, Misbah and her husband came across a special milk available in the US. “The milk which we import costs us Rs 70,000 for 12 cans which last for two months. It’s not available in India,” Misbah says. “A Delhi hospital said there is no treatment available here, so you may think about your next child and leave Haadi on his own.
MSUD, and over 7000 other such diseases are known as ‘rare diseases’ based on how less prevalent they are. Nearly seven crore Indians live with such conditions and yet, there is no health policy in India that defines a rare disease. Consequently, rare diseases do not come under any health insurance coverage. For most of these diseases, drugs have to be imported from the West, often leaving families with little savings.
Unlike in the US and a few other Western countries, there is no screening of newborns at Indian hospitals for 56 treatable rare diseases, often leading to a delayed