In my genes: How family is coping with inherited cancer genes
Working in farmThe 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. 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.
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