Family agony as blindness threatens entire generation
A cold silence and sympathy welcomes you to the family of a 90-year-old Edward M’Ntongiti, at Maganjo village, Gatimbi location of Imenti Central.
M’Ntongiti and his six children, wear a smile of hope as they welcome our writer, but with a wish that they could read the article or see their pictures in the newspaper, a dream that is still a mystery to them.
They all walk with the help of a white cane. Their joy of receiving a visitor is cut short almost immediately, as they start narrating their sad tale, of how the family has been reduced to suffering and agony, after losing eyesight forcing them to depend on relatives and community volunteers, to aid their mobility.
The old man, unable to control his emotion, breaks into tears in between the interview as he narrates how his family sunk into ‘nothing’, when all his children born without any eye defect, became blind at different intervals between the age of seven and 20 years.
Narrating his own predicament when he turned blind at age 27 when he was newly married and expecting his first child, the old man says their life changed to worse, when his wife Esther Nkatha, who was the only person without the impairment, passed on in 2014 living him with the burden of taking care of six disabled children.
“For many years, she was the only person we totally depended on. So she could go look for casual jobs in the people’s farms and get us food, there was nothing much we could do.
But there was one thing that she never forgot to do; tuning a radio to keep us entertained until she came back in the evening,” recalls M’Ntoingiti amid tears.
He adds that his wife was committed to ensuring the children get better education, using the little money she got from her casual jobs.
“I feel like she gave up. Sometimes she could get depressed, cry hard and go for days without eating.
On several occasions, she contemplated committing suicide because she could not stand watching her helpless children but I persuaded her to be there for us,” says M’Ntoingiti; who worked at a white settler’s farm in Timau before he lost his vision.
Cause of problem
The problem is fast spreading beyond the nuclear family. Three of M’Ntoingiti’s grandchildren now suffer from low vision, and have even been advised to attend special schools.
Their predicament remains a mystery in a dark cloud and a riddle, with no concrete answer, cause and solution.
Now the family has been forced to suspect generation curse or witchcraft by unknown people to torment the family.
Medical specialists and experts from a number of hospitals across the country have been unable to diagnose the cause of the problem.
According to the family’s first born Lucy Mwirigwa, aged 60, the blindness in the family may never get a solution and the best solution is for the family to accept and live with the misfortune .
“ I lost my eyesight at age 15 when I was in Class Six. Because of my poor family background, a local church sponsored me to get treatment at various hospitals including Kenyatta National Hospital and Kikuyu Mission Hospital. I spent most of my life as a youth in and out of school.
I underwent about 12 operations but still here I am, without sight,” she says.
Big blow
Mwirigwa says her dream of becoming a doctor was shattered when she was moved from Mwiramwanki Primary School to St Lucy School for the Blind where, because of her advanced age, she could only enrol to skills class where she learnt bakery and dressmaking.
“It is a sad story to imagine one day you walk to school, feeling well and seeing everything clearly and in a few hours, you are taken back home blind, with a fellow student holding your hand.
Then from there onwards, you start depending on others to help you dress and even bathe.
It was a great torture, but with time, I accepted and moved on with life, “adds, the mother of one.
As fate would have it, her only child became blind at age seven while in class three.
She says it was a big blow and the worst tragedy in the family, since it was the same year his two brothers also lost their sight.
She adds the tragedy changed from being perceived as a normal illness to a scaring ordeal, that even made the villagers and some relatives shy away from them, alleging a bad omen in the family.
“It was actually traumatising, we prayed and cried to God even as some villagers and relatives avoided us like plague.
They associated us with witchcraft. We are not sure if we have been bewitched or if this is a hereditary disease but all in all, we trust in God that one day things will change for better,” says Hayub Magayu; the second born in the family.
Magayu now aged 50, is married with two children. He says even after undertaking six operations to rectify the disorder, his life has been at a standstill.
Even after acquiring furniture making, building and construction skills at a special school, he lacks capital to start a small business.
The story is the same for his brother Jacob Mbotella 38, who suffers from multiple impairment ranging from lack of sight, mental and physical disorders.
“It has been difficult for me even to get someone to marry because many women think I cannot bring food on the table owing to my disability,” says Mbotella.
But their last born Moris Gatuguti, who is a fourth year student pursuing bachelor of special needs education at Kenyatta University hopes to change the society and empower people living with disability.
With a good command of English, the 27 year old who believes disability is not inability, dreams to work hard and help the family from languishing in poverty.
In teh meantime, he is calling on well-wishers and the government, to help the family get a capital to start small businesses as a source of income.
Gene mutation
Irene Kangai 35,is a special needs primary school teacher and a bread winner in the family.
“ We are calling upon the Meru county government and the national government to intervene and help us get medical experts, to research and get a cure to this disease, which is spreading even to our children.
My two children aged seven and two, are also suffering from low vision and are currently on observation at various hospitals.
It is so traumatising and giving us sleepless nights because it like it will infect the entire generation,”Kangai says.
Irene who lauded her husband Lawi Kiogora for being very understanding.
However speaking to the People DailyEmmanuel Muthomi; a medical officer at Meru Teaching and Referral Hospital says the illness is a rare eye condition caused by gene mutation.
He says the condition mostly affects children below 16 years, a problem he says researchers in Africa have not yet come up with a permanent cure.
He says the condition which is hereditary requires gene therapy to correct in early fertilisation stage, a treatment he says, is done in a few countries globally.
