Windhoek-Tears, tears and more tears. That was the temperament in which we were welcomed during our recent visit to the Ekandjo residence, in Okuryangava.
‘Sorry’, was Boas Ekandjo’s buzz-word for most of our interview. “I feel sorry,” Ekandjo, who is a former City of Windhoek councillor said, as he struggled to hold back tears.
He then explained that he does not really like to talk about his god-niece Namutenya Hamukoto, who suffers from Noma disease, an opportunistic infection that begins with ulcers in the mouth.
Namutenya’s face was disfigured by the disease. “It (the disease) started with a pimple and it progressed to this condition,” added Ekandjo. According to Facing Africa Noma website, the disease is an acute and ravaging gangrenous infection affecting the face. The World Health Organisation estimates 140 000 new cases of Noma every year, mostly in sub-Saharan Africa.
Ekandjo, his wife Macrina took Namutenya into their home, 14 years ago. In 2003, at the age of five, Hamukoto’s story came to light when it was reported that she needed urgent medical attention to save her life.
Hamukoto who is originally from the Ohangwena region, at that time was brought to Windhoek, by her grandmother. Her biological parents live in Angola. “She came to Windhoek with her grandmother who also left,” Ekandjo related. Hamukoto’s family left her in Windhoek with no relatives, leaving the Ekandjo family with no choice but to accept responsibility for her. A trust fund was set up in her name where Namibians from all walks of life contributed towards raising funds for Hamukoto’s life saving operation.
“I feel sorry,” said Ekandjo. For a while, he pauses. He is careful with his choice of words, as he narrates the life of hardship and pain both physical and emotional that Hamukoto has endured.
“She is strong,” he said, pausing again, before explaining that the disease ate part of Hamukoto’s flesh. “It was open,” adds Ekandjo. He explained that doctors had to take part of her skin as part of Hamukoto’s facial reconstruction.
“The part of her face on which she is operated is still growing bigger,” explains Ekandjo, saying that his adopted daughter is scheduled for an operation in November.
The operation will make Hamukoto’s face thinner and it will include an artificial eye, explained Ekandjo.
“They (doctors) just want to put her in good shape, not as she is looking now”. Hamukoto was seated across her father, whom she refers to as “Tate Ekandjo”.
Dressed in a black short dress, black shoes and a white coat with a doctor’s stethoscope around her neck, Hamukoto actively participated in the conversation.
“I want to become a doctor to save lives,” says Namutenya, explaining her dress code, and that they were asked to dress up for their future professions on the day of the interview, which was a Friday.
Having been diagnosed with Noma has scared her, she explains. Not only physically but also emotionally. And, to make peace with her condition, she had to get out of her comfort zone and live an intentional life, Hamukoto explains.
“I also want to become a doctor because of what I went through. I was diagnosed with the Noma disease, which eats half of your face and if not treated properly can kill you. And I just found out that more than 10 000 people die each year because of my disease, because of a lack of knowledge, because of a lack of doctors. So, I actually want to save lives and to make sure that no other person is diagnosed with the same disease,” adds Hamukoto.
She realised that she was “different” when she started going to school, pretty much in her pre-teens, she explains. Society rejected her. They laughed, they teased, they pointed fingers and they spoke, Hamukoto reminisced. In as much as she tried to be brave, her voice betrayed her. She could no longer hold on to the brave act, as she opened up on her long suffering.
The victims of Noma are mainly children under six years, caught in the vicious cycle of extreme poverty and chronic malnutrition who suffer unimaginable pain, discomfort and social exclusion from their communities, Facing Africa Noma reports.
“Growing up, mirrors and cameras were my worst enemies. I thought I was ugly and worthless but now I know that I am fearfully and wonderfully made”, she adds quoting a verse from the book of Psalms in the Bible.
“It’s really hard but I’ve learnt to put it aside because people always talk. You can be rich or poor, people will still talk about you. Feeling pity for myself will take me nowhere I have realized. All those years I always use to feel pity for myself,” she said.
She added: “I’d not want to go out because I was afraid of what people would say to me. My sisters would always ask me to accompany them to parties but I would always refuse. I would say that I’m going but the moment I went to the mirror I would change my mind,” related Hamukoto. She found comfort in watching television, she said.
“Television was my best friend. I used to watch a lot of TV or I would dance with my sisters and my worst enemy was a camera and a mirror because it always reminded me of who I am…of how different I am from others but I’ve learnt to live with it,” she said. In order to pursue her dream of becoming a surgeon, Namutenya had to let go of the self-pity, she says.
“I asked myself, ‘how long will I isolate myself and live my dream of becoming a doctor’. Success will not come at my footsteps and say: here I am, I should run after my dreams and the only way is to get out of my comfort zone and live my dreams,” added Hamukoto.
Meanwhile, Maria Toivo, the visually impaired coordinator at Windhoek High Technical School, where Hamukoto is a Grade 12 learner, described Hamukoto as a hard working learner.
“Even though she is sometimes in pain she always tries her best,” said Toivo, adding that Hamukoto is one of the good performing learners with disabilities at the school.
“Children with disabilities tend to perform better than ordinary learners because they don’t allow their disability to limit them,” added Toivo.
Asked on whether, she dreams of having her own family, Hamukoto said: “My first salary is going to Tate Ekandjo. I will build him such a big house and it should be a double storey. I will buy him and meme Macrina each their own car. I always dreamt of giving them my first salary to show them how much I appreciate what they did for me. I first want to see them settled then I can start thinking of my life”.
She said that the Ekandjo family opened their arms to her despite not being biologically related. Meanwhile, Ekandjo added that his wish for his daughter is good health.
“I must just thank God, because Namutenya is now healthy and I also wish her more health and when she goes back for the next operation so that it will be a success. I wish for her to come back and continue her studies and complete her school,” he said, again pausing, as he wipes off tears.
“Namutenya remains my god-niece. I have nowhere to send her.”
“She is a member of this family. If anyone comes and takes her away it’s just like taking part of my family. We will survive until she will stand on her own as a woman. For now she is under our guidance. She wants to become a doctor, let God help her ”, said Ekandjo.
At this stage neither Ekandjo, his wife nor Hamukoto held back their tears.
“There are no words and there is nothing in this world that I can say or do that will ever show my gratitude for what you did for me. You have been there in times of sorrow and happiness and the fact that I’m not even your family, you took me in and cared for me even when times were hard,” said a sobbing Hamukoto hugging Macrina and then Ekandjo as they all sobbed.
• This story first appeared in New Era Weekend.