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A TALE OF RESILIENCE AND HOPE: BENONI’S JOURNEY

KALKRAND: While her friends are playing in the dusty streets of Kalkrand, 12-year-old Benoni !Oxurus is confined to the boundaries of her house and left to play with her minor siblings only, because her lipless face is deemed unsightly.

!Oxurus was nine-years-old when she woke up with a rash on her upper lip, a rash that would turn into a permanent scar three years later, needing her to undergo face reconstructive surgery in Cape Town, South Africa.

Narrating her daughter’s fate to Nampa recently, 35-year-old Deline !Oxurus said on 17 December 2019 she took her child to the local clinic, where she received medication. However, after the continuously itchy rashes failed to getting better, the local clinic referred her to the Mariental District Hospital two weeks later.

Deline recounts that after five months of visiting the district hospital, Benoni’s rashes worsened, spreading all over her mouth and nose area, which prompted a referral to the Katutura Intermediate Hospital in Windhoek on 20 June 2020, where
she received her first operation.

‘When we reached Windhoek the doctors told us that a spider bite caused her rashes and was seen by two doctors who performed her first surgery, a resection of infected tissues, skin and muscles on the upper lip,’ she said.

The devastated mother explained that since receiving the first surgery, her daughter has been going between the hospital and home, resulting in five operations done on her mouth area since June 2020, with the last surgery done on 06 April 2023, which left her with the disfigured, isolating look.

The unemployed mother of six said she is currently in limbo when it comes to her daughter’s health, which has left her feeding on soft foods through straws since the fourth surgery in November 2022.

‘The child can’t eat properly. She can’t open her mouth and she only eats soft food such as soup and instant porridge,’ she said.

She stressed her child’s facial appearance is unpleasant to many people including the school, which she left in 2022 while in Grade 5.

‘The teachers barred her from school because her face is unpleasant to other learners,’ said the mother.

‘I want her to be finished with her scheduled referral surgery in SA, so that she can go back to school. She was supposed to be going for afternoon classes now but she doesn’t want to go because she is shy and the kids are teasing her at school. She wants to be fixed first,’ she said.

Shying away from the camera, an emotional Benoni says; ‘I don’t feel good. I feel bad when I look at myself in the mirror and I want to go back to school. I want my mouth.’

Her current health passport shows that her last admission to the hospital was on 16 October 2023, at Katutura State Hospital, when she was diagnosed with mucormycosis, which is a serious but rare fungal infection caused by a group of moulds called mucormycetes.

Mucormycosis is considered the most aggressive and potentially fatal invasive fungal wound infection to occur in the trauma setting, despite aggressive therapy; these infections are challenging
to control, with a fatality rate approaching 96 per cent in immunocompromised patients.

Hoping to restore her daughter’s once beautiful face, the mother of six said in 2023 she wrote a letter to the ministry requesting for prompt action towards the treatment.

The uncertain mother stressed that currently her child’s dignity restoration is in the hands of the Government through the Ministry of Health and Social Services.

‘The state maxillofacial surgeon, who has been attending to her since 2020, informed us in November 2023 that she will be going in December to South Africa… but that never happened,’ she stressed

!Oxurus explained that she is frustrated at how the state hospital is not treating her daughter’s treatment as a matter of urgency, stressing tat the doctor is yet to call the family about the trip to South Africa.

‘I am the one ever contacting the doctors. They make no effort to check up on her,’ she said.

Her health passports indicating her last appointment in November 2023 says she is schedule
d for an operation in South Africa and currently awaiting quotation as well as for all arrangements.

While waiting to hear from her specialist, Benoni has been teaching herself at home how to draw and write, and continues to take medication to manage the pain.

Her eating pace has slowed as she cannot open her mouth fully and she takes 3 to 4 soft meals per day. The condition has also affected her voice, which is barely audible.

Deline, who is an unemployed mother, said they are currently surviving on her government grant, which is hardly enough, further explaining that the daughter’s father is not involved in her upbringing as he is currently in prison.

Efforts to get comment from the Katutura State Hospital proved futile, as questions sent to the Superintendent regarding Benoni’s case were not replied to by time of going to print.

Source: The Namibia Press Agency