Rare disease takes toll on struggling family

Jackline Kababa struggles to speak, with the effort to pronounce each word clearly etched on her face as if the mere attempt to speak causes her pain.

Unless you move closer to catch her words, you might miss everything Ms Kababa says. At the mere age of 35, one might be forgiven for assuming she is in her early 60s.

Before she was diagnosed with spinocerebellar ataxia (SCA) two years ago, Jackline Kababa enjoyed farming.

SCA refers to a group of nervous system diseases that are characterised by degenerative changes in the part of the brain related to the movement control (cerebellum), and sometimes in the spinal cord.

Signs and symptoms may vary by type but are similar, and may include an uncoordinated walk (gait), poor hand-eye coordination, and abnormal speech (dysarthria).

The affected may also have involuntary eye movement, vision and memory problems.

Now, long after she was chased from her matrimonial home when her condition worsened, she sits in a wheelchair outside her mud house, unable to walk or tend to her little vegetable patch, just watching the world go by.

When we got to her home in Daraja Mbili, Kisii County, Ms Kababa was lying on a mattress just outside the doorstep of her mud house. The disease killed her mother a decade ago, and her sister followed in sister in 2004. Her brothers also suffer from the condition.

“I believe that this year I will get help and go back to my normal life because you have visited me,” the mother-of-three who rarely has visitors struggled to articulate.

Of her three children (two girls and a boy), who stand by the door staring forlornly at their mother, her son Kennedy has noticeably slow and sluggish movements, raising fears that he may be going down the SCA path.

MOOD SWINGS AND TEMPER

A stone’s throw away at an adjacent homestead, we find her brother Thomas Onsoti, 40, who was diagnosed four years ago. Unlike his sister, the father of seven can still walk and talk, albeit with struggle.

Having lost hope after the death of his mother and sister, and the deterioration of Jackline, he stopped taking his medication. “I have kids in school, so why should I waste money buying medicine yet I am headed to the grave?” he poses.

His wife Joyce Birara has watched the disease slowly rob her husband of his ability to talk and walk normally, and the financial struggles that have come with trying to treat the disease.

Twenty years into marriage, her husband is no longer the man she married, what with mood swings and temper at the slightest provocation. However, her children are on treatment to keep them free from SCA.

Back at Ms Kababa’s homestead, we learn that her medication costs Sh3,500 a month, a steep price to pay for someone who is unemployed and who depends on well-wishers for upkeep.

One such helper is her neighbour Brenda Nyanchoka who started an online campaign to raise funds for Ms Kababa. Out of that a WhatsApp group of 94 was born, and much needed funds were raised to buy drugs, renovate Ms Kababa’s house and to feed her and her children as well as all coming to Sh10,500 a month.

Consultant physician Dr Angwenyi Ongeri, who treated Ms Kababa when good Samaritans stepped in to help, says that though her condition is stable, it could deteriorate if not properly managed.

Jackline Kababa lost the battle against SCA on 15th January 2018, but for her family, the fight goes on.