A CHINESE proverb says, “There is only one pretty child in the world, and every mother has it”.
Many people will agree with this — as will the children who receive the undying love of their mothers. A family in Ward 8, Buhera South, in Manicaland Province whose last born son has serious facial deformities is no different. To them Tapiwanashe Joni (10) is still as pretty as could be, although his face has been ravaged by a mysterious disease that has deformed his left eye, nose and
forehead.
Tapiwa has a big hole where the left section of his nose should be. The hole is close to the position where his eye is supposed to be. Because of this, his eye has moved up further to the left towards his ear.
The left eye is visually impaired. Setting eyes on the shy boy for the first time one would indeed be forgiven for thinking that he has three eyes because of the big hole. Some in the area call him “the boy with three eyes”.
His hairline has intruded almost half the left side of his forehead. Tapiwanashe says he finds nothing fascinating in life and sometimes just watches time pass by. Unlike many other young boys in the area who enjoy herding cattle and looking for small green patches of grass in the stony area, Tapiwanashe prefers keeping an eye on his brother, who is a tailor, sew clothes.
His only friend is his nephew Benjie with whom he attends school. They are in the same class at Joni Primary School, where he has been admitted to raise his self-esteem. “I love Mathematics and get most answers right. I usually score 10 out of 10 and my teacher likes my performance.
“My dream job is to become a tailor. I want to be like my brother when I grow up,” he said. Tapiwanashe sat alone on the floor while other pupils were in pairs when The Herald visited his school last week. Flies occasionally made trips into the hole and eye, which does not have an eyelid, to feast on its contents and he battled to fan them away.
This distracted him from his classwork. Their classroom has no desks or chairs and Tapiwanashe and his peers write while seated on the floor. He shies away from any sporting activity at school and watches his schoolmates outdo each other. Taking part will result in a lot of unwanted dust entering his nose opening.
His father Jack accepts him as a Godsend, as his name implies. He said they did not disown Tapiwanashe because of the deformities and treated him like any of their children. “We told our extended family about what God had blessed us with. My wife and I asked our other children to suggest what we would do to make Tapiwanashe’s life pleasant.
“We agreed that God had given us such a child for a reason, and his brothers who are carpenters and tailors said they would help financially. The money is, however, never sufficient,” said Mr Joni. Mr Joni added that unlike some families, they did not suspect or accuse anyone of witchcraft when they discovered that their new bundle of joy had deformities.
“We are Christian and attend the Apostolic Faith Mission Church. Considering issues of witchcraft as the reason of disability is a waste of time,” he added.
He said Tapiwanashe gets along well with his relatives and feels comfortable when around family. “The family, even extended, always defends him if they see someone making fun of him,” he added.
He said he has made several trips to Harare in search of a solution to his son’s disability but all have been in vain. “With the little money that we had, we visited a number of doctors who said they would not do anything to cure him of his condition. “They told us that Tapiwanashe could only get the proper medical treatment in South Africa.
“We do not even know how much is required for him to be treated in South Africa since the Zimbabwean doctors could not estimate. If anything, we have no money to go there. We will just wait for fate,” he said. Mr Joni is not formally employed and has no regular income. He heavily relies on farming millet and cotton in this drought-stricken part of the country.
When he sells his produce the money he gets is never enough to start thinking of making the long trip to South Africa. His wife is a voluntary caregiver at Rujeko Home-Based Care Programme. Tapiwanashe is one of the thousands of children with various forms of disability who will be remembered as Zimbabwe joins the world to commemorate the Day of the African Child on June 16.
The United Nations Children’s Fund chose this theme “The Rights of Children with Disabilities: The duty to protect, respect, promote and fulfil”. This theme is in recognition of the fact that children with disabilities continue to be marginalised and they face difficulties in accessing education, health and other social services as well as being able to enjoy their rights.
The African Charter on the Rights and Welfare of the Child (ACRWC) Article 13 addresses the rights of children with disabilities. Sheillah Hellani, director of Rujeko Home-Based Care Programme, said she first got to know of Tapiwanashe’s condition through his mother who is a caregiver. “Through working with her mother, we managed to inform her about the need to open up about her child’s disability and send her to school to reduce stigma.
“Talking to her made her know the importance of bringing Tapiwa to school and integrate him with other children. “We emphasised the importance of him to mix with other children because in most cases you find out that if a child is disabled, parents hide him or her in their homes,” she said.
Mrs Hellani said while their organisation specialises in HIV and Aids issues, they found time visit Tapiwanashe’s mother and support her to reduce the pressure she had.
“As an organisation, we see a lot of issues like these and try to find the right people to assist. We try to talk to organisations like Unicef so that such children are helped,” she said.
There is hope at the end of Tapiwa’s tunnel if he gets money for plastic surgery as some people with serious facial deformities have had successful operations before. According to ibtimes.com doctors at the Brigham and Women’s Hospital Department of Plastic Surgery and the New England Organ Banka replaced the nose, lips, facial skin, muscles of facial animation and the nerves that power them and provide sensation of Charla Nash, who had been attacked by a chimpanzee in June last year.
The 58-year-old Nash lost her eyes, hands and facial features when her friend’s pet chimpanzee attacked her in February 2009. The world’s first full face transplant surgery was made in 2005 in the case of Isabelle Dinoire, a French woman who received the first transplant having been mauled by a dog, ibtimes.com adds.
There have been many successful face transplants. “In 2009, a woman who had lost her nose, cheeks, roof of her mouth and parts of eye in a shotgun attack got a full face transplant. After a day-long surgery at the Cleveland Clinic in Ohio, she got back about 80 percent of her face.
“Five months on from the transplant, she is eating and enjoying the taste of pizzas and hamburgers again, she drinks from a cup, breathes for herself, has regained the sense of smell. Her chronic pain has been reduced,” adds ibtimes.com.
Dallas Wiens (26) of Texas, who had previously come to terms with a vastly deformative injury which virtually erased his face, made his first public appearance after getting a full facial transplant.
- roselyne.sachiti@zimpapers.co.zw
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