For Apollo Njuki’s family, each day is filled with a sense of resignation to their fate. They watch helplessly as a debilitating disease ravages loved ones, claiming their lives one at a time.
Njuki, a father of six, spends his days caring for his daughter Joyce Wambui, 32, and her two daughters.
In his home village in Ndia Constituency, Kirinyaga County, neighbours affectionately refer to him as Polo wa Micha – son of Mica, and willingly give directions to his home.
Njuki’s notoriety, however, is due to the misfortune that has befallen his family for the last 26 years.
As an eager Njuki strides into his compound, a frail and wide-eyed Wambui smiles at the sight of visitors as she leans against the wall of their outdoor kitchen. She is seated on a wooden stool and mumbles a hello as she looks at her father.
After a warm welcome to his home, he ushers My Health onto a wooden bench outside his home, lowers his voice and narrates how he lost his wife and son to a rare genetic condition that has now afflicted two of his adult children.
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In 1995, Njuki, his wife Mary Wangui and six children had plenty to look forward to; they expected a bright and prosperous future.
An ardent coffee farmer, Njuki spent his days tending to the crop, which he delivered to the Mukango Coffee Factory 500 metres from his farm.
“I had just finished building this stone house and erected a water tank when things began unravelling,” he says.
It was during the final days of the construction that he noted his wife was staggering while she walked around the compound.
“Initially I found it odd, but we both dismissed it as exhaustion from household chores. But eventually, she became too weak to stand and often spent her days sitting,” Njuki says.
Two years after his wife first showed symptoms, his second-born son, Patrick Ndegwa, who had just turned 21 at the time, started showing symptoms similar to his mother’s.
“He was a young, energetic man, and after high school, he joined fellow youth in doing odd farm jobs. And then one day, one of my neighbours asked me if my son was drinking alcohol during the day,” he says.
Njuki, surprised by the accusation, defended his son’s character and insisted his family members were teetotalers.
His assertions, however, did not convince his neighbour who fired the young man for fear he would collapse while at work.
Search for diagnosis
“When I noticed that the symptoms in my son were the ones I had seen in my wife, I took immediate action and became determined to find treatment for this strange ailment,” he says.
At this point, Njuki’s wife was confined to a wheelchair while his son’s condition continued to deteriorate. Desperate for answers, he rushed to various hospitals.
“Every test conducted showed there was nothing wrong. I kept searching for answers until I was referred to Kenyatta National Hospital. I was told that there I would probably find the answers.”
At this point, he was desperate and running out of funds and started to sell off his land.
“I sold off my coffee bushes, about four acres of my land, piece by piece. I watched my livelihood dwindle,” he says.
Then he finally had a breakthrough when he was referred to two specialists at KNH, a neurosurgeon who ordered MRIs and another doctor who ordered nerve tests.
“But when the results yielded no answers, they ordered blood tests and the samples were sent to South Africa. That is when I found out what was happening,” explains Njuki.
A DNA test on Ndegwa’s blood led to a diagnosis of spinocerebellar ataxia (SCA), also known as Machado Joseph disease; a rare neurodegenerative condition.
According to the test results, his offspring have a 50 per cent risk of inheriting this mutation.
Njuki’s wife died in 2012, and in 2015, the disease killed Ndegwa.
“The doctors told me there was nothing I could do because the disease was in the genes. I believe it was transmitted to my children through their mother,” he notes.
He says during his father-in-law’s funeral, one of his wife’s relatives approached him and told him that there was a deadly disease in the bloodline.
“This relative confessed to me that apart from my wife, my mother-in-law and grandfather-in-law, as well as other relatives in the family, had all been afflicted by similar symptoms.”
Five years ago, Njuki’s other son and Ndegwa’s twin, Peter Waciuri, developed symptoms of SCA and relatives stepped in to help Njuki care for him. His daughter is also afflicted with the same condition.
“I could not manage to care for my daughter and son, as well as my grandchildren alone, so one of my relatives volunteered to help me care for Waciuri,” he says.
For now, his remaining three children have no signs of the disease, which he says is a relief.
The burden of the condition is evident in his daughter’s voice as she feebly explained that she is not in much physical pain, though it hurts her heart that she can’t care for her children.
“Only my back hurts, but otherwise I could take care of myself and family,” she whispered.
Njuki wishes he had known the condition was incurable before it drove him to financial ruin.
“It would have been better if I had known the truth earlier. I would have diverted my resources to making my children comfortable. But now I have to accept this is God’s will that I care for my children with what I have left,” he says.