November 18, 2011
Doctors are baffled by a strange disease that has dragged an A-student out of school and reduced him into a skeletal figure. Sixteen-year-old Alex Ng’ang’a now depends on his mother to carry him from his old bed every morning onto a makeshift chair to lie till evening. The former student at Thika’s Joytown Secondary School has endured this routine for the last two years and his mother says doctors have been unable to diagnose this disease. His face leaves a haunting image. It is covered with dark skin that looks burnt.
Alex’s eye sockets are sunken and the flesh is all but gone with wounded skin now left covering the bones. Ng’ang’a can no longer stand without help. “Doctors cannot tell us what it is,” says his mother, Faith Nyambutu. Ng’ang’a scored 334 marks in the 2009 KCPE at Stara School in Rungiri where his family lives, near Kikuyu. He was among the best pupils in central Kenya and was admitted to Parklands Boys School in Nairobi.
He was however taken to Joytown special school because he is partially deaf and the strange sickness had began to crawl on him. “It started in 2006 in class five with joint pains, inflammation of muscles and swollen eyes,” Nyambutu says. They initially took him to a clinic in Kinoo in the outskirts of Nairobi.
In 2007 he was taken to Kenyatta National Hospital where doctors gave him a cream to use and some drugs to fight what they called allergic reactions. “They said the swelling was allergy. But it grew worse when we returned home. He couldn’t carry anything, even a five-litre jerrican,” says Nyambutu.
They later took him to Mater Hospital where doctors called the condition ‘connective tissue disorder.’ This refers to more than 200 diseases that impact the body’s connective tissues. Each has its own symptoms, needs different treatment and some have no cure. “He was admitted and they said the puffiness was caused by kidney cysts”.
Diagnosis in another hospital said he has crest syndrome, another connective tissue disease, while other doctors simply said they do not know what it is. Nyambutu says from Mater they took him to a Nairobi arthritis hospital but she could not afford the Sh15,000 required for treatment. The 33-year-old mother, who has a younger child, is a casual worker at a small counseling centre near Kikuyu. Her husband is a plumber but did not want to be interviewed fearing it might bring “shame” to his family.
Ng’ang’a was returned to KNH but Nyambutu found the same doctor from the private arthritis clinic. “He was angry and asked me whether I wanted the child to die so that I can eat him. That was very hurting, because I spend every coin I get I spend on my child”. Ng’ang’a’s condition grew worse, he started developing nodes on his body which rapture into wounds.
When admitted at the Coptic hospital in 2007 the doctor told them that his disease had no cure and all they could do is manage it. He was also admitted at the AIC Kijabe Hospital. Initially he used to go for clinical check-ups at the hospital but had to stop because he simply could not sit in a taxi-cab. “Sometimes we hire an ambulance when he needs to go to hospital. And it’s Sh4,200 one way. A taxi was Sh2,000 one way,” the mother says.
Nyambutu says they no longer take him to hospital and all she does now is buy some painkillers when there is money. “I borrow a lot and many times when there’s no one to borrow money from, I tell him to be strong because God knows I was willing but I did not have money.” She also pays a helper Sh200 to take care of Ng’ang’a and his young sister every day when she goes to work.
The young student, in a little more than a faint whimper, says he misses his friends from school. His mother says only one boy visits him occasionally because his family lives close-by. She says Ng’ang’a dropped out of form one last year because life became unbearable. “We were being called there every three weeks. Eventually, he dropped in second term,” she says. He got a B+ in the end term exam although he was very sick at the time. “I’d want to be a computer expert,” Ng’ang’a says.
Nowadays he occupies himself with a Bible and sometimes gathers some energy to write stories or some songs.“His brain works,” says Nyambutu. “But of late I have noticed he forgets a lot.” She has watched her son degenerate from a handsome, bright boy into the current situation. Nyambutu feels life would have been easier if they were fighting a disease that is known. But many doctors, she says, plainly said they do not know what it is.
Faith Nyambutu Wangui.
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