''Dear Sir, my daughter Ellen is suffering,'' every email begins. ''Can you help us?''

And with that, and with  every prayer, The World Students Society requests all the blessed people of the world to help.

IN INDIA, and in many of the world's poorer countries, the pharmaceutical industry's latest advances for rare diseases are often agonizingly out of reach, impossible for almost all but the wealthiest families to afford and not covered by health insurance.

In desperation - and encouraged by the occasional success story - many desperate needy turn to social media to raise funds.

Eluru, India : Desperate Indian parents plead for funds online. Children with rare diseases need imported drugs, but families can't afford them.

When her baby started struggling to breathe, Stella Praveen had a terrible feeling that something was wrong with her 14-month-old daughter, Ellen.

She ran barefoot to a nearby clinic, but the doctors said the child needed to see a specialist right away. Without an ambulance, she rode a motorcycle 35 miles to a children's hospital in another town, where Ellen remained in intensive care for 12 days.

Two weeks later, Ms. Praveen learned that her daughter, who had never been able to lift her neck or roll over, was suffering from spinal muscular atrophy, a rare condition often fatal by age 2.

''We had not even heard of this disease,'' Ms. Praveen said. ''She was misdiagnosed many times.''

The Praveen family was momentarily heartened to learn that a promising gene therapy treatment was available, but quickly crestfallen over the cost : $2.1 million.

Every morning, Ellen's father, Rayapudi Praveen, sends hundreds of emails on five crowdfunding websites like ImpactGuru and GoFundMe, asking people to contribute money to save his daughter's life.

With only four months left before Ellen turns 2, time is running out - and the family is still far from its goal.

Spinal muscular atrophy in an inherited neuromuscular disease that kills more infants worldwide than any other genetic disorder.

In India, one study found it occurred in one in every 7,744 live births, or about 3,200 Indian babies each year. Symptoms for all four types of the condition emerge at different stages.

Infants like Ellen with Type 1, the most severe show symptoms within their first six months : struggling to move their limbs, to swallow, to suck and eventually to breathe.

Across India, pediatric neurologists said, growing awareness among parents about the disease has led to identification of more patients.

In recent years, India has established a reputation as a low-cost manufacturing hub for multinational pharmaceuticals, and the drugs made in the country are often substantially less expensive than imported ones, thanks in part to government price caps.

But the therapies for many rare diseases are still typically imported, confronting patients and parents with an excruciating truth :

India's status as a rising pharmaceutical superpower is of no help to them.

With sadness The World Students Society thanks authors Sameer Yasir and Shalini Venugopal Bhagat.


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