Couple’s agony of raising physically and mentally challenged children

Hezron Ayugi, his wife Anyango and their physically and mentally challenged children in Mbita, Homa Bay County. They are appealing to well-wishers to help them get proper medication. [PHOTOS: PETER OCHIENG’]

Homabay, Kenya: When Hezron Ayugi and his wife Anyango fell pregnant 34 years ago, their hearts were filled with joy - they were going to be parents! But their joy would be short lived. Rose Atieno, their first baby, became sick when she was only six months old. Her legs and hands became weak.

She became shy and her tiny hands could not even hold her mother’s breasts while suckling, like other infants do. The distraught parents took her to Mbita and Homa Bay District Hospitals, but the doctors could do little to save the situation, since they could not detect the disease. Surprisingly, the child looked healthy and normal.

Little did the new parents know their agony had just begun for their other children would suffer the same problem. Jackline Adhiambo, 32, James Odhiambo, 30, Lucy Aoko, 28, and Janet Akumu, 26, developed the same illness. Meanwhile, the doctors were having a difficult time figuring out the problem. The sad parents were soon turned into maids. They had to be present to care for their children during their every waking moment.

As though in synchrony, the story for each of the five siblings has been the same: their health begins to deteriorate at about six weeks old, with the condition weakening the bones and deterring any form of movement.

Mr Ayugi, 56, is still looking for answers as to why his five children, born normal and healthy, are not only physically challenged, but also mentally-ill. Their legs and hands are weak and they can barely do much for themselves. Sometimes, the four girls gang up against their brother, although they can’t beat him. Their parents have to keep on changing their clothes, which get soiled every now and then since they can’t take themselves to the toilet.

When The Standard on Sunday visited his Kasgunga village in Homa Bay County, he was helping feed one of his children. “They cannot feed on their own. My wife and I have to help them. It is trying for us because we cannot get out and leave them behind. When my wife is out, I have to be within the compound,” says Ayugi.

Their upkeep has become a source of worry to Ayugi. Despite his fairly large family, he can only afford to house them in a one bedroomed semi-permanent house. Ms Anyango runs a mtumba business at Mbita Trading Centre, although passively, since both she and her husband cannot be away from home at the same time. Their small shamba generates little for the family, and Ayugi does menial jobs whenever possible to earn some cash.

“Life is a challenge; our focus has changed from a parental role to that of caretaker due to the strange condition that has become difficult to treat. It is a terrible situation because all of us can’t do business far away from our home,” he says.

The situation has earned the family stigma, and neighbours avoid their home, some saying the family could be paying for some sin committed against the community. A number of locals have attributed the family’s rare condition to a generational curse.

 

“We have had a rough time trying to explain to our neighbours how our children became sick. Our relatives did not want us to share anything with them concerning the children. Some told us to move to another place, saying the disease would infect or curse their children,” Anyango said.

Rumour goes that Ayugi’s family was cursed after their grandfather, who was fishing in Uganda was allegedly forced to drop hundreds of disabled persons into Lake Victoria by Idi Amin Dada, the former President of Uganda. Onyango, an elderly villager, says Ayugi’s father Daudi Wandi had opened up to his friends before he died in 2003 that he was a fisherman in Uganda when that happened and he had been forced to participate in the odd ritual.

Ayugi acknowledges that his father was a fisherman at Lolwe Islands of Uganda between 1982 and 1986, although he never served as Amin’s personal driver, as is the locals allege. “People have come up with wild allegations, with some claiming my father was one of the drivers that poured scores of disabled people into Lake Victoria following instructions by former Uganda leader Idi Amin. But to me it is not true because my father never worked in Uganda as a driver, he was a fisherman,” says Ayugi.

But the father of five says he cannot refute the claim, even as he wishes his children can live a normal life. “What we can say now is not about what happened; what is important is to look for ways to save the lives of these innocent children. I don’t understand why the alleged curse would come to my family and leave the person who did it,” Ayugi wonders.

He says he has taken his children to Tabaka Hospital in Kisii, Nyabondo Hospital in Nyakach, Nyaburi Hospital in Karachuonyo among others without success. Interestingly, no one in the extended family has ever suffered a similar fate. Ayugi and his wife hope that one day a cure will be found for their brood. For now, they take one day at a time as they voice a short term dream - to own a radio to keep the family entertained, since their children can hear fairly well.