Protus Mangeyo has lost his children to a strange paralysis disease in Shinyalu, Kakamega County. [Mumo Munuve, Standard]
For nearly five years, a family in Shinakosi village in Shinyalu, Kakamega County, has been battling a mysterious illness.
Protus Mangeyo and his wife Catherine Sicheyi started losing their sons to the disease in 2017.
“Our second born Justin Misigo, 23, developed complications and later succumbed to the illness,” says Mangeyo.
The couple was still coming to terms with the loss when their other son, Hillary Matengwa, died in 2020.
“This year, we lost our firstborn son Elphas Shiundu, 29, who succumbed to the mysterious disease. We don't know why this only seems to occur in our family,” says Mangeyo, 60.
They took their sons to hospitals, including the Kakamega County referral facility, for specialised treatment but ended up losing them.
Mangeyo, a former bus driver, said he is living in constant fear of losing his other four sons, including Cyril Imbayi, 16, who is currently bedridden.
“There are no words to describe the pain of losing children. It hurts,” Sicheyi, 51, told The Standard.
The couple says it is hard to predict if their children inherited a genetic disorder.
“Strangely, the illness attacks only boys. Our two daughters are healthy,” said Sicheyi.
The couple is appealing to medical experts to come to their aid and help treat their son.
Imbayi, who is confined in an old metallic wheelchair, wonders whether he could be the next. He sat pensively in the wheelchair gazing at the three graves from their house verandah.
"Every day, I sit here for a moment agonising over my condition and the death of my bothers. It is a habit I developed six years ago after I got paralysed," he says.
Imbayi said the disease crushed his dream of studying engineering. "I resigned to my fate."
According to the boy, his life changed when he was in Standard Three. "Suddenly, I could not walk as I used to, and I could not change clothes, wash or move around."
Imbayi said he longs for the day a good Samaritan will show up and help him get proper treatment. "I become envious when I see my peers going to school."
He believes God will protect his other siblings so that they can help their struggling parents.
The couple took us to the gravesite. One appeared fresh complete with a tomb cross.
"Here lies our first, second and third-born sons. Sometimes we break down when we recall how they suffered," says Sicheyi.
She said life took a dramatic turn 17 years ago when his children started exhibiting mysterious symptoms. "It took us time to notice the symptoms. It was too late when we took them to hospital."
The couple said the disease started manifesting when the children were between 10 and 11 years.
"They start growing weak and can hardly walk, they become crippled, and their health deteriorates before they die," said the mother of nine.
Mangeyo said he quit his job to take care of his sons. “My children were born healthy. The illness struck when least expected."
Genetic disorder or witchcraft?
Doctors at the Kakamega referral facility told the couple that the disease was genetic or hereditary.
“We have not experienced such a disease in our extended family, but doctors insist it could be a genetic disorder," said Sicheyi
They also visited Jaramogi Oginga hospital, Aga Khan and several private hospitals for a second and third opinion.
Mangeyo and his wife have also visited different churches seeking prayers for their children. "We have exhausted all the options, and now all we do is pray so that God can intervene."
Sicheyi said at one point, their relatives thought it could be something to do with witchcraft. "We were told to let the children go live with their aunties far away from home, but that did not work."
Medical experts said the illness could have everything to do with Duchenne muscular dystrophy, a genetic disorder.
Dr Joshua Anzere at Kakamega County referral hospital said the genetic disorder mainly attacks muscles. "It is progressive and becomes worse as the child grows."
"It manifests in leg muscles or hands like in the case of the three children, then progresses to the chest. At this stage, breathing becomes a problem, and other health complications get in."
He said the condition is common in men. "Women are generally the carriers, and when they give birth, the disorder starts manifesting in their children, mainly boys," said Dr Anzere.
According to Anzere, the disorder has no cure and can only be managed by steroids that slow its progression.
"Steroids can only be administered after a thorough medical examination on the patient. The parents could resort to physiotherapy when taking care of the affected children," he said.
Kakamega County Health Executive Collins Matemba said, when such cases are brought to his attention, he usually deploys medical experts to conduct tests and help the affected patients.