Cry of a mother whose children’s survival is no guarantee
By Monicah Mwangi
The rugged but spectacularly beautiful hills of Murang’a are tiered like giants staircases. The dirt paths between Kangare and Makomboki are rocky, and where there are no rocks, the mud is ankle-dip. It is rainy when we arrive to our destination in a small village in Kigumo constituency.
The place is busy; a shoulder to shoulder pedestrian, most of them barefoot with some fascinated in different activities; some picking tea while others tilled the land.
We found on our journey, as well as in the place where we stopped that those people are caring; they treated us with as much confidence and good-will like they had known us all their lives.
The place looks very great, houses stand in good order, one close to the other. The place is enviously green with different types of plants with tea estates dominating most of the land.
At the heart of Gituru sub-location stand Anastasia Njeri’s home which we are interested in. Its late evening when we arrived and children are home, all of them bare-footed, captivated by their creation – their own-made games.
Anastasia is not home nor is her husband; a young girl leads us to the sitting room where we wait for her for about thirty minutes. Pictures of her three sons who passed away from a genetic condition called Duchene Muscular Dystrophy hang loosely on the wall.
Its 7PM when she walks in with a bottle of milk, children are quiet now and we later learn some of them were from the neighboring families and had come for tuition done by one of Anastasia’s son for a fee.
After a short introduction she leads us to a small room where I immediately start the interview which, despite the time constrains went on for about an hour. She is in her late forties and has never had an easy time since she was twenty. Her firstborn son, Mwaniki, who was eight by then started having complications, “At eight a child is big and walking and so was my son but slowly his legs became weak and as any mother could, I decided to take him for a check-up,” she says.
She took him to the Nyeri General Hospital where they were admitted for two weeks, “by this time”, she says, “the situation had deteriorated and the boy was supporting himself with the toes.” She says the doctors almost broke her heart when they released them and said they could not do anything since the condition was genetic. “They said there is nothing they could do about my son since the condition was genetically involved. With lots of doubts, I had to leave the hospital.”
Her dissatisfaction made her seek assistant elsewhere and she ended up at Kenyatta National hospital, “the story was the same here, they even told me all my children could have the same problem and advised me to stop wasting money on hospital,” she says amid tears.
At twelve, mwaniki had to drop out of school and by the time he was fifteen he could not do anything on his own; the mother had to do everything for him, including washing and taking him to the toilet. He was on wheelchair for six years until he passed on at the age of twenty one.
Since then, Anastasia’s biggest task was to take care of the other two brothers who had developed the same problem but they eventually died before they got twenty five. Anastasia who was a mother of nine now remains with six children and two of them have this condition.
Sometimes life becomes even harder for Anastasia when her husband becomes non-supportive. “There was a time he wanted me out of this home since I was thinking of not having more babies.” Though we left the place without his sight, Anastasia says he has since changed and he sometimes cooks for the children when Anastasia is not home.
Doctor Evans I. Amukoye,
a general pediatrician in Nairobi says there is nothing doctors can do about the condition. He goes ahead to say that the gene which causes the problem is carried by the X chromosome (carried by women) hence it only affects boys and runs in the family. “If those boys happen to marry, all their sons will be healthy but all the girls will be carriers so their next generation will get the problem,” says Dr. Amukoye.
Though all the girls in that family are healthy, Amukoyes says half of them are carriers and it’s possible that their sons will have the problem. He encourages exercise but advises those with the problem to seek medical attention to avoid exhausting themselves. “A doctor should decides who should do exercise and who should not since some of them are usually too weak and could end up doing much than the body requires.” The condition can be detected long before a child is born but Amukoye says all they can do is advice the parents to avoid getting boys.
One of the affected sons, Peter Macharia is twenty three. With a lot of sacrifice and pupil’s support; he is the only child with the problem who has managed to finish his education up to secondary school.
When we caught up with him, he was sitting on a wheelchair busy doing what he does to earn some cash; teaching. With his strong mellowed voice, he tells us how he walked for 1 kilometer for three hours everyday to get to their neighboring school. “I knew education is power and I was determined to go for it no matter what,” he says.
When he joined Githumu High School in 2004, he knew he wouldn’t do much on his own. “I depended on students to do most of my chores like washing cloths; hanging them, helping me bath sometimes and even supporting me walk. “Were it not for their support, maybe I could have dropped out,” he says. With the help of the current Member of Parliament for Kandara, Maina Kamau, he acquired a
wheelchair when he was in form two. “We shared a wheelchair with my brother back at home and I had to leave it for him when school opens.” He cleared last year and managed to get a C- (minus) and his mother gives a lot of credit for that.
Though he tries to practice a lot, the much he can lift is a five kilo weight. Peter beliefs he has a talent in music and has written up to ten songs but have not recorded any for lack of finances. “I teach three children every night who in return pay Sh20 which I am trying to save to help me record at least one of my songs.” He has a positive attitude that he will one day stand on his feet and be able do everything for himself. “I belief I will get well even if its not tomorrow or the day after but in the near future,” he says
His brother Simon Nganga is very shy. He is seventeen and dropped out of school in class three due to the same condition. Maybe he hasn’t seen new faces in a long time why he may have decide to remain silent. It’s at this point that the mother intervenes, “he talks less but he is ok,” she says. She reminds us that the problem does not pain, a thing which Dr. Amukoye confirmed. “Legs are the most affected parts but eventually hands and joints get weak but there is no pain, at all,” he say.
As his music dream visits his heart, he believes that one day, he will march through the obstacles, and become a musician who will preach the word of God. As we left, he called his students back to his room where he do the teaching.