Mother seeks answers to sons tribulations

By Titus Too

Even though she has been blessed with nine children, Mama Fwelida Chogo has not known happiness for the last two decades due to a strange medical condition afflicting her sons.

Chogo has lost two sons to the ailment, while four others can neither walk nor fend for themselves as their limbs are deformed.

Strangely enough, Chogo’s three daughters are in good health.

The affected boys appear weak with thin skin that lack muscular tissues.

"They are born normally like any other baby, but after sometime, they become weak and their body growth slows down," says Chogo. Due to their deformity, the daunting task of feeding, clothing and caring for the disabled children falls on Chogo who is a single mother.

The Chogo family faces a daunting task of feeding, clothing and caring for the disabled children. Photos: Andrew Kilonzi/Standard

Her sons Charles Madanyi 17, Geoffrey Chogo 13, Simon Imbaga 7, and David Mudogo 4, can neither walk nor talk.

The deceased sons, Aggrey Karani, 21, and Dick Madanyi, 8, who had the same problem, died in 2009.

Financial aid

Chogo says none of the hospitals in Lugari she had taken her sons to for medical attention has explained to her the disease they suffer from.

"At hospital, I was told the problem is polio. This surprises me because all my children did not miss any vaccination," says Chogo.

Chogo rules out the possibility of the condition being hereditary as nobody either in her family or in her late husband’s has ever suffered from the disease.

"My family’s income has been adversely affected because I have been forced to stay at home and care for these boys. Neigbours have been supportive and sometimes contribute food or financial aid to us," she told The Standard On Sunday in an interview at her Kongoni home.

Five wheel chairs that were donated to them by a charitable organisation have since broken down and the mother is forced to carry her sons on her back when taking them to hospital. A family friend, George Nyandusi Manyara, 39, who also suffers from the ailment, introduced us to the Chogos.

Nyandusi says he was diagnosed with the condition called muscular dystrophy several years back, that affects muscle tissues leading to general body weakness.

"I had a normal childhood and was active at high school. I started experiencing weakness from my lower limps and was diagnosed with muscular dystrophy in 1999, some eight years after I started feeling weak," he says.

Nyandusi says he cannot walk without support as his legs have also started developing deformities. "I have consulted doctors who said the problem only affects boys and it is a genetic problem," says Nyandusi.

Nyandusi says his brother also suffers from the condition.

The graduate from a local university says he lost his job due to the disease.

"This is a very difficult condition because it makes one immobile, leading to dependency. Even when I go to bed, I only sleep on one side because I cannot turn due to lack of strong muscles," he says.

From an energetic, hardworking man, Nyandusi has now been confined to a life of misery with his body growing weaker and weaker by the day.

"This condition has reduced me to dependency. I cannot bath or do simple things like dressing on my own," says the eloquent Nyandusi.

He says that apart from its debilitating effects, those suffering from the ailment also have to grapple with the stigma attached to it. "Some people associate our condition with witchcraft or HIV/Aids due to how our bodies weaken and we become very slim. People start shunning us because of the burden of taking care of us and the mystery behind this disease," says Manyara. Despite his illness, Nyandusi has registered an NGO – Network for People with Disabilities based in Eldoret to fight for the rights of people suffering from the disease.

He lauds Parliament for enacting the Persons with Disabilities Act and appeals to the Government to ensure funds disbursed to assist the disabled reach them.