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LifestyleStigma, pain plague 9-year-old girl with rare condition


Stigma, pain plague 9-year-old girl with rare condition

Diella, a 9-year-old girl, faces daily challenges and stigma due to her rare medical condition, preventing her from enjoying a happy life.

Originally from the Nyiragongo district in the South Kivu province of Goma, Democratic Republic of Congo, Diella was born with a rare condition that affects the muscles around her neck. This condition causes her severe pain, exacerbated by ongoing bullying from her peers and community members.

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As the fifth child of eight siblings, Diella is the only one with a disability. Her parents, Kitumani Jijuka and Cecile, recall her challenging birth at the hospital, where she struggled to breathe due to her condition. She required a breathing machine for eight days before being discharged. The cause of her condition remained unknown to her distressed parents.

“She is my fifth child. All my children were born okay, but I don’t know why she was born different,” Cecil bemoaned in an interview with Afrimax English.

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Dr. Joseph, a medical practitioner closely following Diella’s case, recognizes the enigma surrounding such conditions. He suggests potential causes ranging from maternal illnesses during pregnancy to untreated infections. However, Diella’s parents have yet to receive a definitive explanation, leaving them grappling with uncertainty.

As Diella has grown older, her condition has worsened, manifesting in chest, leg, and arm pains. Despite these hurdles, she courageously pursued her education, only to face relentless bullying from her peers. Derogatory nicknames like “bat” stemming from her distinctive appearance further compounded her sense of isolation and diminished self-esteem.

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Teacher Ampire, assistant director of EPE Makimbilio School, commended Diella’s academic excellence, noting her consistent ranking among the top five students despite her disability. However, the bullying adversely affected her academic performance until her parents intervened, prompting authorities to address discrimination.

Diella’s challenges extend beyond the classroom, as she encounters social ostracism within her community. Despite her resilience, she struggles with feelings of inferiority and lacks confidence, questioning her worth compared to her peers.

Doctors stress the urgency of surgery to alleviate Diella’s condition, yet her parents lack the financial resources to pursue treatment. Kitumani expresses deep concern over the financial strain of raising eight children, lamenting their inability to afford the necessary medical care for their beloved daughter.

Cecile shares her husband’s concerns, acknowledging the doctors’ willingness to treat Diella but lamenting the insurmountable cost barrier. Despite their unwavering love and concern for Diella’s well-being, the family finds themselves trapped in a cycle of financial hardship, unable to access the life-changing treatment she desperately needs.

Diella’s story reflects the challenges encountered by children with disabilities in accessing adequate healthcare and overcoming societal stigma.

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