• Keya was born with hydrocephalus and fecal incontinence, he cannot control bowel and urine leakage.
• The orphan used to receive stipend from the National Council for Persons with Disabilities but that dried up in 2018 after his father died.
Nineteen-year-old Ian Keya exudes a bubbling personality and a warm heart that is ever welcoming to visitors at his one-room house in Nairobi’s Korogocho slums.
However, behind his charming personality is a teenager bulging with physical and emotional pain as his life hits a new low during this Covid-19 crisis.
The Standard 8 pupil at St John’s Primary School in Korogocho spends most of his days secluded in his dimly lit house as he struggles with health complications.
“I was born with hydrocephalus and faecal incontinence. I cannot control my bowel and urine movements and this is something that I feel so embarrassed to say sometimes,” Ian narrates.
Hydrocephalus is a condition where extra fluid accumulates in and inflames the brain and affects muscle coordination, cognitive abilities as well as loss of bowel control.
Faecal incontinence is mostly caused by hydrocephalus and prompts patients to involuntarily pass urine or bowel content.
Since July 22, Ian has been unable to attend his weekly medical sessions at Neema Hospital in Kasarani where he goes for dressing of the wounds in his abdominal area.
The wounds are bed sores from a long period of hospitalisation in 2019 and his faecal incontinence condition.
“Even now, as I speak to you, I am in a lot of pain but just persevering through it. I am supposed to go to hospital one day per week. However, I cannot afford Sh200 for transport for every time that I have to go to hospital,” Ian says.
Dry financial tap
Unless he receives food donations from well-wishers, Ian has on many nights slept hungry.
“Rarely do I leave this house to go outside because I don’t have anywhere to make an income. If someone does not come through for me, I just sleep like that,” he says.
He uses a stove to cook for which he has to spend Sh60 a day for paraffin, although this is risky because of the choking fumes that it emits in this poorly-ventilated room.
Under normal circumstances, Ian would receive at least Sh16,000 every two months from the National Council for Persons with Disabilities (NCPD) to meet his personal needs.
However, this financial tap has dried up after his father, Festus Idigira, passed on in 2018.
“My dad used to receive the money on my behalf and that is what we would use to feed ourselves. I suspect that someone has been receiving the money because I haven’t received it ever since he died,” Ian says.
An enquiry by the Star at the local Social Development Office in Ruaraka constituency revealed that the money for persons living with disability for the month of June has already been disbursed.
However, the records could not indicate whether the funds meant for Ian had been disbursed or even ascertain who has been receiving them for the past two years.
Secluded from family
Ian's father was the only family member who was close to him. He is the seventh-born in a family of eight.
“I last saw my brothers and sisters in March last year although some of them live nearby. I also never went to our rural home in Vihiga even for the burial of my father,” he says.
Before the coronavirus hit Kenya, Ian was staying with his grandmother who later relocated to their rural home and has not returned even with the lifting of the cessation of movement order in Nairobi.
Community health volunteers in the area and officials from World Friends have been generous enough to visit him and help him with his needs.
His close neighbour has also lived up to the parable of the good Samaritan by constantly assisting him with household chores.
At school, life is no easier as Ian had to trek for a long distance. Many of his classmates did not understand his condition.
“Whenever I feel that the diaper is filling up and about to burst, I have to rush back home and change. Some of the pupils do not understand and used to make fun of me,” he says.
He was lucky to obtain a wheelchair to mitigate the long distance but it tires are now worn out. Despite these myriad challenges, Ian maintains a positive outlook on life. The emotional and physical anguish have done little to erase his infectious smile.
A safe and clean environment where he can adequately manage his medical condition and eat regularly is all he is asking for. He believes that the regular stipend he used to receive from the NCPD would hugely alleviate most of his challenges, especially during this Covid-19 period.