I have mentioned my neighbor Marina before. Well this post is about her and the organization that she never intended to found. Rather it is the narration of an experience. I endeavor in this post simply to relate what I saw and what I was told, free of any of my own judgement. I just want to present a picture, an experience.
I was picked up at the junction of the parish drive way and the main road and climbed into the back of a white pickup with the logo of Tiyende Pamodzi Group (Working Together Group)on the side. Already perched on mattresses amidst mostly homemade PT equipment were Marina and Fatch, a Malawians physical therapist. The cab contained the driver and secretary.
We bounced along the road to a small town where we stopped to add a passenger to the back -- a young woman with a little girl, three years old, with cerebral palsy. When we pulled over Infront of her, the little girl was tied to the young woman's back, but to climb in, she untied the chitenji sling and passed the girl unceremoniously to the person closest the talegate -- me. So for the next half hour I cradled the totally helpless little girl, trying to spare her the worst jolts on the very bumpy road.
Our destination was St. Martha's hospital an out station hospital of Namwera Parish. Once a month, the hospital turns it's kitchen, an empty picnic shelter type space, over to Tiyende Pamodzi to hold physical therapy sessions for children and a few adults (usually stroke victims).
Mothers and grandmothers with children ranging from a few months to seven years strapped to their backs, were already gathering when we arrived. I was sent to sit in a corner where I could see everything and receive a running commentary from Fatch and Marina.
First, there was the fitting of special shoes wired together and outward for children with "crab feet." Their feet are bent in; nothing wrong with the brain, it is a purely physical disability, but unless corrected, the child will never be able to walk causing problems the rest of their life. If caught at birth, it can be fixed in six weeks, otherwise it takes years, but still "an easy fix." Although apparently, some mothers seeing the child improved will stop having them wear the boots at night when they are around three, then they relapse and it us harder.
The largest group of children present had cerebral palsy. It is pretty common in Malawi, caused by women being very young when they are pregnant, the mother being older and having had so many children that her body is tired (older women frequently have children, because divorce and remarriage is so common and they want a child with the new husband; in villages, women will sometimes have nine children all with different fathers. To quote Marina, "It is frequently the family situation more than the disability that is the problem"), or cerebral malaria. Marina said that most have no hope of a cure. When asked life expectancy Marina said, "at home (Italy) I would say there is no hope, but here it is true God provides." Fatch chimed in, "God does provide; we wake up with no food, but in the evening somehow we eat."
If the cerebral palsy is very advanced, these little ones, so frail, will be left inside the hut all day by themselves while the mother and other children are working the garden.
In most cases, with no man present, it is the mother who gardens as the only means of feeding and supporting the family, and in a country where you only get one harvest during the rainy season. . . well, they often suffer hunger. For the children strong enough to support their heads Marina said, some of the mother's would take them to the garden and dig a hole to put them in so that they can be with them and not tip over. So that these very frail creatures can go out with their mothers and not be alone, Tiyende Pamodzi Group provides special "corner chairs" that keep the child seated upright, even when they lack the muscle strength. Marina explained that it is really this bond between mother and child that they are working for. Their mission is for the disabled child to be loved and cared for as any other child and not shuttered away. There is a great deal of shame and stigma around disabled children.
The little ones with Hydrocephalus go to Blantyre to have a drainage tube installed in their head. Then once or twice a year, they go to Zomba or Blantyre to have the head measured. It costs around 15000MK one way to get to Blantyre. Now we f you are a single woman with no job, where is the money ney going to come from?
Epilepsy is very common and caused by cerebral malaria. It featured several times in the list of afflictions suffered by different children.
Having watched session after session of PT, I wandered away to watch the mother's and children who were done. They were feeding their children an enriched porridge that Tiyende Pamodzi provided or them. It was a mix of maize, ground nuts (i.e. peanuts), oil, and soya. The recipe came via Feed the Children in Blantyre.
As I watched the beautiful scene, Fatch called me back. There was a little girl that he wanted me to see. She looked great compared to the others, but he said "I wanted you to see this one: osteogenesis imperfecta," and he pointed to her ankles which where curiously bulgy. Her bones had grown wrong. There was nothing he or Marina could do, but they keep such children in the program to monitor so that when it does become a problem and the malformed bones cannot hold weight (around four or five) they can refer them for surgery to Blantyre. It is apparently a very painful condition. As the child grows, the bones continue to grow in the wrong way. It requires frequent surgery with rods inserted in the affected areas to hold weight. Without frequent surgery one cannot be certain how long the child will live, because the malformed bones break as the child grows.
Again I wandered and came back to see a child in Fatch's arms. It was sweet, then the child breathed deeply, and its belly bulged out, like a tennis ball was coming out of its tummy. Fatch was deep in conversation with the grandma who had brought the child. Marina came over and spoke seriously to Fatch, then she turned to me and explained:
The little girl had an Umbelical Hernia. It required surgery, but the in order to get the surgery which takes place in Blantyre, the case had to be referred by the hospital in Mangochi. Now Marina said the doctors in Mangochi have no interest in helping the people from the villages. Having sent patient after patient and they are treated rudely, she told Fatch that if he convinced the grandmother to take the child, then he had to call and arrange ahead to ensure that they were welcomed. She said that these people have so little trust and it is so easily broken that if they send them to Mangochi and then after all the time and money spent, they are treated badly, their trust in Marina and Fatch will be broken. Fatch is well aware of this. He had told me on the drive how he loved his work and how everything that they do is free. His face was glowing, then it went dark as he told about women coming to him begging and tearfully offering him 5000MK to help their child, crying that they do not have 15000MK. That is what was demanded of them by the government hospital -- the hospitals that, on paper, are supposedly free. The glow returns to his face as he continues that the people can hardly believe when he says that his service is free everything is payed for by AmayMarina -- that's right, the whole operation is covered by Marina from the money she earns while working for a couple months in Italy and by unsolicited donations from friends back home.
How did this ministry start? Well, there are several beginnings and turnings, but the work with disabled children began when Marina "discovered" them. A volunteer working with her who would identify patients in the villages needing a visit told her about one. For the most part disabled children are kept out of sight in the huts due to the shame and lack of understanding. Marina made it her mission to bring the children into the light and visible to the community.
She knew that it was possible when a woman approached her and asked if Marina could help send her to Feed the Children in Blantyre. This organization offers 15 day trainings in caring for disabled children with food provided. The cost is 6500MK a day, so 97,500 total. When the woman came back, all on her own she invited mothers with disabled children and taught what she had learned to them. When Marina saw that, she knew that it was worth continuing with the program and trying to help the disabled children, that the gaurdians were willing to work and could motivate each other to work for their children.
Marina continues to send mothers (like the one pictured above)to Feed the Children. She says it is beautiful, because the women become leaders in their group now having something to share and teach. Both mother and child also come back fatter, Marina smiles. With the severely disabled this is particularly beautiful as they are very frequently malnourished, because they are difficult to feed. I can't tell you how many tes Marina said "malnourishment and don't go together." Really malnourishment doesn't go well together with anything.
The picture above illustrates the point. The little girl laying on her back is 7 years old. I would not have believed it if Marina had not told me that she has followed the case since the girl was one year old. Marina spoke to the old woman with her then came to me and spoke in her rapid Italian way, "I got angry. I get so angry at cases like this." Then she poured out the story: Both parents are alive, but have given the girl over to the care of the Grandma without giving her a second thought. The girl is frequently admitted to Mangochi hospital for malnutrition and will just scrape by. The grandmother brings her to the Tiyende Pamodzi meetings and is given ingredients for nutritional porridge to bring home. Today when Marina began to look her over there was fungus in her mouth. Marina asked when it started. The grandmother said, "two weeks ago." No medicine had been bought, despite this particular family having the means (Marina is at great pains to know her families and their situations). It is here that Marina lost her temper, "We have known you for seven years, and it us always the same thing we say. What do you want from us?" She sent the grandmother home for the care record that each child has that is added to at each meeting, and from there to the hospital. Hearing the story, I was baffled. If they so neglected child, why did they keep taking her to the hospital when she is malnourished? "You see I force them,Marina said," I say that I will call the chief and the welfare, so they do it." I then hesitantly asked about culpable neglect and how in America, this girl would have been taken away, but Marina shook her head, "Here it is so common, there are so many, if you told the welfare workers, they would just shrug." Marina finished her tirade by declaring that it is not money or resources that are needed, but a change of mindset.
Trying to balance between education and helping. She has to make the mother's understand that "the child is their child, their life, and when something is wrong they have to do something about it, they cannot wait for me to come, tell them something is wrong, and to solve the problem." Today there was a child with osteogenesis imperfecta, and the rods were beginning to come out, because the child had grown. The mother had made no attempt to do anything or seek medical help anywhere yet the child was in agony.
At that center, there were 27 children that day. Currently Tiyendi Pamodzi sees 411 children. There have been more than 1000 since the begining.
The organization is made up of Marina, Fatch a paid physical therapist, a paid secretary, a paid driver, a paid watchmen at their building were they keep supplies, and volunteers. The volunteers are frequently people who have been helped by Marina who now want to give back. They live in the villages, make home visit check ups to make sure that treatment and medication are being done as prescribed, they help translate when Marina's Yao is insufficient to the occasion, and notify Marina of new cases. As I said earlier, almost all expenses are paid for by Marina personally. She buys medicine, she buys PT equipment, she buys shoes, she buys food for nutritional porridge, she pays the salaries of the paid employees.
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