A father’s walk against sickle cell disease

Sickle cell disease remains one of the most prevalent yet most neglected conditions in this country, disproportionately burdening families in the Lake Region and the Western region, where the disease is as common as it is misunderstood.

For one father in Busia, the weight of raising a sick child and burying another became impossible to carry in silence. So he did something extraordinary. He walked. 

It is past midnight on the outskirts of Nakuru. Kevin Ochieng has been walking for two days. His feet are blistered. His body is exhausted. But he does not stop. He cannot afford to.

He is walking for his children.

Kevin Ochieng is a jua kali worker, a man who makes his living by the sweat of his hands under the open sky. He and his wife, Susan Adhiambo, have four children. One is gone. Another is still fighting.

For the first two years of his firstborn's life, Kevin did not know anything was wrong.

"Mtoto wa kwanza alipozaliwa akamaliza miaka miwili sikuwa nimejua kama anaugua, nikapata mtoto wa pili, baada ya kufikisha mwaka mmoja ndio wakaanza kugonjeka pamoja," says Kevin.

By the time the second child turned one, both siblings had begun to fall sick simultaneously. It was then that the family was told what they were dealing with—sickle cell disease—a condition that had been quietly shaping their lives before they even had a name for it.

For Kevin, the years that followed were a slow, grinding education in what it means to parent a child the world has not made room for. Fourteen years old. Unable to go to school. In too much pain to imagine a future. Kevin and his wife watched their own child slowly surrender to a life of walls.

"Nimekazana sana, hadi mtoto ana miaka 14, hata last year mtoto hajaenda shule, analia na uchungu sana, ashajiwekea kwa maisha yake, hawezi songa mbele," says Kevin.

"Mtoto anashinda akiniambia kwa shule anatusiwa, ametengwa. Huwezi hisi vizuri. Mtoto sikupenda kwake, hakujua atakuwa hivyo," reflects his wife Susan Adhiambo.

Susan's voice carries the particular grief of a mother who blames herself for something she could not have known. She did not choose this for her child, but the disease does not ask permission.

And the stigma that follows it does not either.

Sickle cell disease is an inherited blood disorder where red blood cells change shape from round to hard and sticky crescent shapes, resembling a farm tool called a sickle.

Because they are stiff, these cells get stuck in blood vessels, blocking blood flow and causing severe pain and organ damage.

An estimated 14,000 children are born with the condition in Kenya every year, and the disease burden closely follows the pattern of malaria endemicity—concentrated in the lake region, the west, and the coast. Busia County sits squarely in that high-burden corridor.

In western Kenya, approximately 4.5% of children are born with sickle cell disease, and 18% with the sickle cell trait. That is not a statistic. That is a classroom. A market. A church congregation.

"Naomba wakati ambapo wanatafuta wale wameathirika kama walemavu, jamani pia wale wako na sickle cell kwa sababu hali zao za kutembea ni shida, wakati mwingine unapata hata mtu mwingine hawezi kuamka," says Collins Sirama, a Sickle Cell Warrior.

Collins knows this truth not from a report, but from his own mornings—the ones where getting out of bed is not a matter of will, but of pain.

People with sickle cell disease, he says, deserve to be counted among those the government sees. They say the burden of just managing the disease on a daily basis is insurmountable. Five types of medication. Three hundred shillings each. Every single day.

"Unapata kwa wiki unahitaji hata dawa za shilingi elfu kumi. Kuna dawa aina tano, na kila ni mia tatu," says Maureen, a mother to a sickle cell patient.

"Sana sana tunaomba waje watuokolee. Madawa ni mia tatu kila siku. Sisi wazazi wa jua kali, tunafanya mia tatu kila siku. Tunashindwa, tutanunua madawa, tutasomesha, tutalinda watoto," Kevin further explains. 

Kevin Ochieng is not a politician. He is not a doctor. He is a father. And when the weight of caring for a sick child became too heavy to carry alone, he did the only thing he knew—he moved.

He gathered a team of six supporters and, on a Sunday morning, they left Nairobi on foot. Their destination: Busia. Their purpose: to make noise that could not be ignored.

"Nilisema siwezi ngojea. Wacha nitembee ndio wengine wasaidike," says Kevin.

Two members of the team would not make it past the halfway mark. The road through Nakuru, through the cool highlands, through the long stretches of nothing, took what it took. But Kevin and three others kept going. Six days. City to county. Blisters and resolve in equal measure.

"Nilijisikia uchungu sana, nikajiuliza mambo mengi. Ndio nikasema nitajituma. Kama Mungu alisema mimi naweza kufanya, wale wengine wafaulu — waweze kupata madawa hata kama serikali itaingilia, kupata madawa kwa bei nafuu, hospitali ziwe na machine, tweweza kupata screening," Kevin shares.

Kevin's walk ended in Busia, and it was heard.

"We have now instructed our officers in procurement to start to include the medicine," says Busia Governor Paul Otuoma.

A directive. A promise. Small, perhaps. But in a county that has long carried a disease burden higher than the national average with limited resources, it is a beginning.

Governor Otuoma went further, offering counsel that reaches beyond the clinic walls.

"Ningewashauri sana wale ambao wanataka kufunga ndoa, vile tu huwa mnaenda kanisani mnauliza kuna mtu yeyote anapinga hii ndoa, kama kuna shida, ingekuwa tu mzuri kupima haya magonjwa ambayo sometimes yanaweza toka kwa mzazi kwenda kwa mtoto."

It is advice that comes too late for Kevin and Susan. But for the next generation, it could mean the difference between suffering and prevention.

For now, the ask is simple. See us. Name us. Count us.

"Naomba wakati ambapo wanatafuta wale wameathirika kama walemavu, jamani pia wale wako na sickle cell..." says Sirama.

Kevin Ochieng walked over 400 kilometres to make a point. And when he arrived in Busia—exhausted but accomplished—he did not ask for applause.

He asked for medicine. Affordable medicine. Screening machines. A government that remembers that the families of the jua kali are also citizens.

One man, five days, 400 kilometres. And somewhere in Funyula, Busia, a 14-year-old child is waiting to find out whether the world will make room for her.