DRC: Possible leprosy goes undiagnosed in unseen family

By: Alice Bafiala; Communications; World Vision DRC

During the Global Week of Action, we focus on the unseen, uncounted and invisible children and their families who are not able to access the health services that would save their lives. These are the children that millions of citizens are mobilizing for during the Global Week of Action from 1-8 May.

This is Chancelvie’s story.

For some time, four-year-old Chancelvie, the eldest of three daughters, has had visible ‘stains’ on her face.

"When my husband left, we went to live with his mother, but she was sick. We think Chancelvie caught the same disease, suspected to be leprosy,” says Chancelvie’s mother, Sophie.  This is not an official diagnosis – the family cannot afford to see a doctor.  

Chancelvie’s grandmother died about a year ago.

A traditional village healer had told the family that the consumption of ripe papaya was the most likely cause of the red color on Chancelvie’s lips. But then the spots appeared. They began to spread across her face.

Soon everyone in the village was convinced that this little girl was suffering from an infectious disease.

"There are some mothers who forbid their children to play with Chancelvie,” says Sophie.

The family members all sleep in a single room - putting them all at risk if this is in fact an infectious disease.

 "The hospital is 3 or 4 km from here, and on top of that, it takes money to see a doctor. I already struggle to feed my children - where would I find the money to go to the hospital?” says Sophie.

Local pastor, Jean Mona, an active advocate for the importance of healthcare in saving children’s lives, explains that the village, which is 80 km from the capital, Kinshasa, is left out of planning decisions because nobody is monitoring the population and its needs. "Many children are not listed in the official statistics of the municipality of Maluku because women do not give birth in hospitals. They give birth at home with the help of midwife. This community is often forgotten in immunisation programmes because children are not registered at birth.”

Meanwhile, Sophie hopes that the ‘stains’ on the skin of her daughter will fade. “All I do is pray to God that the disease disappears. And if means become available, I will not hesitate to take her to the hospital.”

World Vision recently released the report, ‘Uncounted and Unreached’ which highlights the unseen and uncounted children who could be saved by better data. Read it HERE.

Find out how you stand for the unseen and uncounted children during the Global Week of Action HERE.