A Mother’s Dilemma: Eat Today or Bet on the Future?
Thousands of children with reversible blindness come from families who choose not to get medical care in favor of keeping their child blind. This is one such story.
Hathrus, India — The SUV rumbled through this sprawling urban city seeking a family living in the same-named village. Cows roamed the streets freely, and artisans opened their shops for business on an early Saturday morning.
“Drive through that unmarked street,” a passerby told the driver. “You might find them there.”
Project Prakash journeyed into the interiors of rural India early one morning on a special mission: Locate a family where all but one of the children suffered from reversible blindness and persuade them to get surgeries.
Dust covered the windshield of the white SUV as it journeyed out of Delhi and heaved through the enormous potholes, venturing toward expansive green pastures into the nearby village bearing the same name.
Modernity had largely escaped this village. Women pulled their saris over their faces as a form of modesty. Men earned pennies a day toiling the land, and most families were so poor that buying milk to put into their tea was a luxury reserved only for weddings. Most were illiterate.
“I think this is it,” the driver said as he pulled into the pathway leading to the home of Gudi Devi, her husband and five children. The home, a broken, brick-laded shack housed a steer that ate better than the humans.
Meeting the Family
Married at the age of 14, Gudi Devi married a man that her father choose, and life was hard. The family lived on $1.10 a day. Their first child was born — a girl — followed by two other girls and then two boys.
Gudi had been born with low vision and all but one of five her children had suffered the same fate. Devastated by their situation, the parents largely shunned socializing with others in the village.
India is home to the largest population of children with low vision and curable blindness in the world. Exact figures have proven hard to pin down, but estimates suggest that anywhere from 200,000 to 700,000 people suffer from reversible blindness often in the form of enlarged cataracts.
The culprit is often genetics. In the case of Gudi Devi, genetics played a determining factor. A simple surgery could have likely reversed her blindness as a little girl, but her parents could scarcely afford it.
Having spent her entire life at home and with no education of her own, it was hard for her to imagine a life outside of the village. She and her husband placed two of their children in a blind school in Delhi that housed them and gave them daily meals, meaning fewer mouths the family had to worry about.
The Difficulty of Daily Life
Statistically, 40% of cases are blindness in India are curable. The major barrier is often poverty and even lack of imagination. For many families, the struggle to make it through the day envelopes life. Dreaming big is reserved for those with the means.
When nearly every parent in the developed world would gladly pay to reverse their children’s blindness, Gudi Devi deliberated. The extra support the family received from the government was crucial to daily survival. If they were helped, wouldn’t that mean that being sighted would create greater burdens?
“Let us help you,” outreach coordinator Harvendra Singh said.
“We’re poor!” Gudi Devi insisted.
For the next several hours, the team extolled the benefits of providing surgeries and how sending her children to better schools that could lead to better jobs and a more secure future.
Gudi Devi acquiesced; two children, Sapna and Akash, might get surgeries. She promised to think about sending the others.
It was a half victory. Dusk began to set in. The Project Prakash team piled into the empty SUVs for Delhi.
Epilogue
Project Prakash checks in with the family regularly, and they may allow surgeries for two children.
“That they are open to sending even two of their children to the Prakash Center says a lot,” executive director Sheila Lalwani said. “It’s a long road, but we won’t give up on them. It’s the one thing we can’t do.”
To learn more about Project Prakash or support curable blindness in India and rehabilitation efforts, click here.
Thank you for reading.
