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You can find the current article at its original source at https://www.theguardian.com/global-development/2018/oct/22/girl-who-didnt-hide-overcoming-odds-burkina-faso-tetra-amelia-syndrome
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| The girl who didn't hide: overcoming the odds in Burkina Faso | The girl who didn't hide: overcoming the odds in Burkina Faso |
| (about 2 months later) | |
| Angèle Bouda was walking through the market in Gogo, near the district capital Manga, when she saw the crowd. People were gathered around, clapping a young girl with severe disabilities who was dancing to music as her mother collected money from onlookers. | Angèle Bouda was walking through the market in Gogo, near the district capital Manga, when she saw the crowd. People were gathered around, clapping a young girl with severe disabilities who was dancing to music as her mother collected money from onlookers. |
| Bouda, who works with disabled people, was intrigued by the little family and stayed behind to talk to Wendabo, aged eight at the time, and her mother Pascaline. It is unusual for disabled children in Burkina Faso to be so visible; normally, Bouda’s team have to go door to door to find children who are kept hidden away. | Bouda, who works with disabled people, was intrigued by the little family and stayed behind to talk to Wendabo, aged eight at the time, and her mother Pascaline. It is unusual for disabled children in Burkina Faso to be so visible; normally, Bouda’s team have to go door to door to find children who are kept hidden away. |
| Wendoba has tetra-amelia syndrome, a rare genetic condition that affects limb development in the womb. Pascaline’s husband blamed his wife for their daughter’s disabilities and left soon after the girl was born. As she grew older, Wendabo’s dancing became the family’s main source of income. | Wendoba has tetra-amelia syndrome, a rare genetic condition that affects limb development in the womb. Pascaline’s husband blamed his wife for their daughter’s disabilities and left soon after the girl was born. As she grew older, Wendabo’s dancing became the family’s main source of income. |
| “On big market days, she could bring in 5,000 CFAs (£6.70) in a day, on smaller ones it would be two or three thousand,” says Pascaline. “I was disappointed at first when he left, but who else is going to take care of my baby if he won’t? I had to get on with it.” | “On big market days, she could bring in 5,000 CFAs (£6.70) in a day, on smaller ones it would be two or three thousand,” says Pascaline. “I was disappointed at first when he left, but who else is going to take care of my baby if he won’t? I had to get on with it.” |
| The family rent their hut for 2,000 CFA a month. It’s a stretch, both financially and physically. Wendabo, her two sisters and their mother, unable to fit inside together, often sleep in the open, even in the rainy season. | The family rent their hut for 2,000 CFA a month. It’s a stretch, both financially and physically. Wendabo, her two sisters and their mother, unable to fit inside together, often sleep in the open, even in the rainy season. |
| When Bouda first met the family, none of the girls were in school. To prepare for Wendabo to go to school, through its community-based rehabilitation programme, the NGO Light for the World provided physio and a wheelchair, helped with teacher training, provided an access ramp for her classroom and sought to raise awareness among her fellow pupils. | When Bouda first met the family, none of the girls were in school. To prepare for Wendabo to go to school, through its community-based rehabilitation programme, the NGO Light for the World provided physio and a wheelchair, helped with teacher training, provided an access ramp for her classroom and sought to raise awareness among her fellow pupils. |
| Today, Wendabo is a lively schoolgirl, popular and outgoing. | Today, Wendabo is a lively schoolgirl, popular and outgoing. |
| “It was difficult at the beginning, it was the first time I’d encountered such a child. But I knew, as she is God’s creature, I should accept her in class,” says Eboubié Kamouni, her teacher for the past four years. | “It was difficult at the beginning, it was the first time I’d encountered such a child. But I knew, as she is God’s creature, I should accept her in class,” says Eboubié Kamouni, her teacher for the past four years. |
| In a class of 74, learning is inevitably teacher-centred, attention maintained with the crack of a stick on a desk, as pupils write and calculate in French rather than the Mooré language they speak at home. | In a class of 74, learning is inevitably teacher-centred, attention maintained with the crack of a stick on a desk, as pupils write and calculate in French rather than the Mooré language they speak at home. |
| Wendabo writes with her stumps rather than her prosthetics, finding it easier, and her mother has been shown daily exercises with which she can help her. | Wendabo writes with her stumps rather than her prosthetics, finding it easier, and her mother has been shown daily exercises with which she can help her. |
| It takes time to establish a working relationship with parents; some mothers initially fear their child may be taken away from them. Pascaline was used to coping alone. On the day Wendabo was born, a neighbour dropped in to visit. Even though her contractions had started, Pascaline did what she could not to let them show until her visitor left. | It takes time to establish a working relationship with parents; some mothers initially fear their child may be taken away from them. Pascaline was used to coping alone. On the day Wendabo was born, a neighbour dropped in to visit. Even though her contractions had started, Pascaline did what she could not to let them show until her visitor left. |
| “When the child started to appear, I lifted myself up and I could see that she didn’t have hands, just two upper arms. I continued pushing and when she came out, I noticed that she had no lower limbs either.” | “When the child started to appear, I lifted myself up and I could see that she didn’t have hands, just two upper arms. I continued pushing and when she came out, I noticed that she had no lower limbs either.” |
| Pascaline cleaned up the newborn to show her husband. But he would not touch his daughter and hasn’t to this day. | Pascaline cleaned up the newborn to show her husband. But he would not touch his daughter and hasn’t to this day. |
| Neighbours in the community were curious to see the new baby that Pascaline named “will of God”, even as others labelled her a monster. There were rumours that the father and a local official would “get rid of her”, until Pascaline felt she had no choice but to move away. So began several itinerant years, until the family settled in the small hut in the village of Kaolin. | Neighbours in the community were curious to see the new baby that Pascaline named “will of God”, even as others labelled her a monster. There were rumours that the father and a local official would “get rid of her”, until Pascaline felt she had no choice but to move away. So began several itinerant years, until the family settled in the small hut in the village of Kaolin. |
| When Wendabo did begin school, her teacher says, her attendance wasn’t regular and support workers realised she was still going to market to dance and beg. They talked with Pascaline and worked out a solution for an alternative source of income. She was given a canopy, pots and pans to set up a cooked rice market stall. | When Wendabo did begin school, her teacher says, her attendance wasn’t regular and support workers realised she was still going to market to dance and beg. They talked with Pascaline and worked out a solution for an alternative source of income. She was given a canopy, pots and pans to set up a cooked rice market stall. |
| Wendabo’s elder sister, Wendami, 16, used to push her wheelchair down the rough footpath to school. But Wendami has left school. Older than her classmates, and with the overcrowding at home, she’s had to move to her father’s place near the mine where he works. She’s looking forward to coming home permanently. | Wendabo’s elder sister, Wendami, 16, used to push her wheelchair down the rough footpath to school. But Wendami has left school. Older than her classmates, and with the overcrowding at home, she’s had to move to her father’s place near the mine where he works. She’s looking forward to coming home permanently. |
| Wendkouni has stepped in as her sister’s escort. Now seven, she was at first too young to start school, so she waited under a tree while Wendabo was in class until support workers persuaded the school director to admit her early. Teachers say she’s flourishing. | Wendkouni has stepped in as her sister’s escort. Now seven, she was at first too young to start school, so she waited under a tree while Wendabo was in class until support workers persuaded the school director to admit her early. Teachers say she’s flourishing. |
| Now 12, Wendabo says she likes school, being sociable and making friends and wants to be a teacher when she’s older. | Now 12, Wendabo says she likes school, being sociable and making friends and wants to be a teacher when she’s older. |
| Once embedded in the school community, the next challenge was to improve Wendabo’s living conditions. It took four years of patient negotiations to find somewhere better. A local priest convinced an elderly gentleman to give the family a small plot of land not far from their current hut. The new breeze block house is modest, but rainproof, with a small area to grow beans, okra and peanuts. The family will move in a few weeks, after their millet is harvested. | Once embedded in the school community, the next challenge was to improve Wendabo’s living conditions. It took four years of patient negotiations to find somewhere better. A local priest convinced an elderly gentleman to give the family a small plot of land not far from their current hut. The new breeze block house is modest, but rainproof, with a small area to grow beans, okra and peanuts. The family will move in a few weeks, after their millet is harvested. |
| Light for the World and a local partner, the Organisation Catholique pour le Développement et la Solidarité, raised 261,300 CFA to build the little house. | Light for the World and a local partner, the Organisation Catholique pour le Développement et la Solidarité, raised 261,300 CFA to build the little house. |
| Wendabo’s mother aspires for her to become a respected member of their community, and to be able to take care of herself and her mother in her old age. | Wendabo’s mother aspires for her to become a respected member of their community, and to be able to take care of herself and her mother in her old age. |
| People with disabilities failed by dearth of funding worldwide, say campaigners | People with disabilities failed by dearth of funding worldwide, say campaigners |
| Emmanuel Guigma is one of Wendabo’s modestly paid support workers. “Today you can see how Wendabo is a genuine centre of interest at school. Children with a disability suffer so much, as all too often people reject them – as Wendabo’s father did – and they remain isolated at home. | Emmanuel Guigma is one of Wendabo’s modestly paid support workers. “Today you can see how Wendabo is a genuine centre of interest at school. Children with a disability suffer so much, as all too often people reject them – as Wendabo’s father did – and they remain isolated at home. |
| “What motivates me to walk door to door in communities to help them is to see her newfound independence. I want to help protect children like her so that they are accepted. To see her empowerment and integration quite simply makes me happy.” | “What motivates me to walk door to door in communities to help them is to see her newfound independence. I want to help protect children like her so that they are accepted. To see her empowerment and integration quite simply makes me happy.” |
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