In my genes: How family is coping with inherited cancer genes

                                                          Erick Mutai and his daughter. [Photo, Standard]

Just when Frankline Mugendi was about to learn to walk, his world was plunged into darkness. His eyes suddenly developed a high sensitivity to light and discharged some fluid.

His parents, Elias and Joy Kithinji, were rightfully concerned and took him to Chogoria Hospital. The hospital referred the boy to Nairobi's Kenyatta National Hospital for specialised care.

Mrs Kithinji stayed with her son for almost five months at KNH before the ophthalmologist gave a bleak diagnosis - their son's eye had to be removed if he was to live.

It was an easier decision for the couple to make if it meant saving their child's life. After losing two children in their infancy, the couple did not want the experience again.

Easier decision

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When Elias and Joy got married in 1970, they had dreams of a happy home filled with children. They knew the children would bring them joy. Yet, 48 years down the line, the couple narrates agonising stories of cancer and deaths that have stalked them.

In 1971, the couple got a baby boy, but he died a year later. Four years later, they were again blessed with a baby girl. She, too, did not live beyond one year.

The two cases left the couple worried, but they could not help the situation. They did not know what caused the deaths of their children.

Silently, the devout Christians questioned whether they should believe the rumours swirling around their superstitious community that they were cursed.

Despite this blow, the two did not lose hope and in 1982, they gave birth to their third baby, Frankline.

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The couple would later come to know that their son had a rare form of eye cancer called retinoblastoma.

In some cases, a child is born with a mutation in the retinoblastoma gene they inherited from one of their parents.

As a result, their family portrait is uncanny. It is hard not to notice that of their three children and six grandchildren, most are either blind or have had one of their eyes removed due to the cancer.

The fourth boy, Erick Mutai, also had his eye removed in KNH in 1987 when he was a year old.

What surprises the family is that their fifth born, a daughter named Hellen Karendi, was never affected like the other siblings.

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The problem has been passed down to a third generation. What Karendi got spared, for instance, afflicted one of her children who died from the same condition. Another had an eye removed.

Working in farm

The Standard found the Kithinjis working in their small coffee farm in Karagani village of Maara Constituency. They have been hoping that the farm's yield will at least ease part of the burden they bear.

In the first instance, as we came to learn later, the couple thought we were the Good Samaritans they had been praying for.

We introduced ourselves and told them of our mission and they decided to get out of the farm so we could talk.

They led us to their homestead, where we sat under a tree to listen to their story.

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Since the couple has had no formal employment, man and wife had to sell land to cater for the hospital bills for their children.

"If it were not for these unfortunate events, I would today be one of the richest people in Chogoria, considering that a plot of land ranges between Sh1 million and Sh2 million, depending on the location," he said. 

Last month, Mr Mutai's eldest daughter was referred to Kenyatta National Hospital from Chogoria Hospital and it is here that they realised the family had been suffering from a hereditary eye cancer, retinoblastoma.

In families with the inherited form of retinoblastoma, preventing retinoblastoma may not be possible. However, genetic testing enables families to know which children have an increased risk of retinoblastoma, so eye examinations can begin at an early age.

After the doctor realised the girl's condition, he requested that her younger sister be screened, and surprisingly, her condition was worse.

One-year-old Queen Abigael's eye was removed and replaced with a prosthetic while her elder sister is undergoing chemotherapy sessions because both her eyes are affected. "Doctors suggested that her two eyes be removed, but we opposed the move after which he suggested some chemotherapy," Mutai said.

Admitted in the same hospital for the same problem is Mutai's nephew Vincent Ngugi. The disease has left Mr Ngugi's elder brother Brian Murithi, who sat his Kenya Certificate of Primary Education this year, blind.

Mutai and Mugendi (elder brother) have also sold half an acre each from the three quarter-acre-piece they were allocated by their father, to cater for hospital expenses.

Mutai says he has used more than Sh300,000 for treatment of his two daughters.

The three children are expected to visit KNH every three weeks, and each of them is expected to pay Sh20,000 for chemotherapy sessions.

"It is not a walk in the park to afford Sh40,000 for my two girls, excluding other expenses, considering I do not have any reliable source of income. I had to recently hold a fundraiser, which at least catered for the young girl's hospital expenses," said Mutai.

He said the other problem was that KNH had no drugs for chemotherapy and patients were sent to buy them from outside so they could be administered in the hospital.

He said his National Health Insurance Fund (NHIF) cover had been exhausted and that they were planning to register for a second one.

The family feels the Government should declare cancer a national disaster, just like HIV/Aids, to enhance accessibility to treatment.

Mutai said he strained every time he had to go to KNH because of accommodation and other expenses.

He is expected to book sessions on Thursdays so they can see the doctor the following Monday.

Some make fun of me and my brother Mugendi when we walk together with each of us missing an eye," Mutai said.

Their children suffer the same taunt in schools, especially when their fathers visit.

Despite all this, the family believes one day God will wash away their tears and remove the hereditary disease from the family.

KNHChogoria Hospitalretinoblastoma