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9-year-old girl faces stigma and pin due to her rare condition

Diella, a 9-year-old girl is unable to live a happy life as she faces pain and stigmatisation every day due to her rare condition.

9-year-old girl faces stigma and pin due to her rare condition

Hailing from Nyiragongo district in South Kivu province of Goma, Democratic Republic of Congo, the youngster was born with a rare condition affecting the muscles around her neck. She endures severe pains, compounded by relentless bullying from her peers and community members.

Being the fifth child of eight, Diella is the only one with a disability. Her parents, Kitumani Jijuka and Cecile recount her difficult birth at the hospital, where she struggled to breathe due to her condition. She was placed on a breathing machine for eight days before being discharged. The cause of her condition remained a mystery to her distraught 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.

Dr Joseph, a medical practitioner who has been monitoring Diella's case, acknowledges the mystery surrounding such conditions, suggesting possible causes ranging from maternal illnesses during pregnancy to untreated infections. However, no definitive explanation has been given to Diella's parents, leaving them grappling with uncertainty.

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As Diella grew older, her condition worsened, accompanied by chest, leg, and arm pains. Despite these challenges, she bravely embarked on her schooling journey, only to encounter relentless bullying from her peers. Her distinct appearance earned her derogatory nicknames like "bat," further exacerbating her sense of isolation and low self-esteem.

Teacher Ampire, assistant director of EPE Makimbilio School, commended Diella's academic prowess, ranking consistently among the top five students despite her disability. However, the bullying took a toll on her academic performance until her parents intervened, prompting authorities to take action against discrimination.

Diella's plight extends beyond the classroom, as she faces social ostracism within her community. Despite her resilience, she struggles with feelings of inferiority and lack of confidence, often questioning her worth compared to her peers.

Doctors emphasize the necessity of surgery to alleviate Diella's condition, yet her parents lack the financial means to pursue treatment. Kitumani expresses deep concern over the financial burden of raising eight children, lamenting the inability to afford the necessary medical care for his beloved daughter.

Cecile echoes her husband's sentiments, acknowledging the willingness of doctors 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 provide the life-changing treatment she desperately needs.

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Diella's story mirrors the challenges faced by children with disabilities in accessing adequate healthcare and overcoming societal stigma.

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