She falls in a faint minimum of three times a day. After recovering from that she is tied to a rope to prevent her wandering off, making her parents to leave everything and start searching for her.
Whenever Mwera winds are to blow or it will rain in few days time, her brother suffers from Mwera, a condition that sees his testicles go inside and cause severe abdominal pain. He does not walk properly as his upper part of the feet rest on the ground adding pain.
Both are dumb, deaf and mentally ill. The male one always cries while the female sleeps. She makes noise and cannot sleep unless she faints.
This the tale of Margaret (12) and John Ngoleka (9) of Wisiki Village, Traditional Authority (T/A) Machinjiri in Blantyre. Doctors attribute their health problems to cerebral malaria which hit them in the early years of their lives.
Their peers are in senior classes at Bangwe Church of Central Africa Presbyterian (CCAP) primary school in the area, but due to their condition, Margaret and John are just home.
All along they have been prescribed Pronetharine and Panado as shown in their health passports. The first minimises the number of faints and the second reduces pain.
It is a month now since they run out of stock of their drugs and the situation worsens with each passing day. Their parents have no transport fare to get the drugs from the hospital.
“Is there no cure for my children? Doctors at Queen Elizabeth Central Hospital [QECH] said the healing is gradual, but all these years there is no progress. Most of the times when we go to the hospital we are given Panado and Phonobia [Pronetharine]. They [the doctors] say it minimises the number of faints.
“The children’s brains were affected, but we need help. It is hard for me to go to the hospital to get the medicine. I do not have money. John faints. Margaret can be in a coma for three days. We are just home looking after her,” says the mother of the children, 52-year-old Judith Ngoleka.
She says Margaret answers the call of nature unknowingly and if no one is around, she plays with her stool.
“Life is hard. My children are over five years, but cannot handle their body system. Despite all these, they do not wet the bed. Margaret can cover herself with blankets and makes noise all night. John has to be put to bed and he cries often. They need specialised treatment. We do not have peace and ask urgent assistant from well-wishers,” adds Ngoleka.
Ngoleka says she does piece work and what she brings home is too little to feed the family and take the children to the hospital for medical attention.
She says with the children’s situations, it has become hard to do piece work to earn some income, stressing that she cannot leave them alone. She says they need attention day and night.
The father of the two, 57-year-o Leo Ngoleka, who used to offer bicycle repair services in Limbe, is also stuck at home helping Judith to care for the children.
He says: “I cannot concentrate on the work while my children are in this state. I left the business to my other children to help my wife taking care of Margaret and John.
“Before they were born I developed this land. But now we are no longer active and financially disturbed because we exhausted all the proceeds on these children. Surely, we need people to help our children so that they can become normal and we can be searching for work.”
Leo believes this is the right stage for his children to get medical help before they mature.
“They are young, anything can be done to save them from these problems and relieve us too. They deserve better. They are required to do most of the things by themselves. We do not have the financial muscle to get all necessary medical attention that is why we ask well wishers to help in any kind. John needs to walk properly. His bones can be normalised so that the feet stand effectively.
“It pains me a lot as a father not to communicate to my children through any means. They were born normal. But if they cannot talk, people should help us with sign language techniques. They should be in school. As parents we should not provide care from our perspective. We need them normal and hear their needs,” he says.
Leo says Margaret is tied to a wheelbarrow to avoid her wandering off and John is always on the back as he feels pain whenever he tries to walk.
Leo and Judith Ngoleka have six children. The other four are normal.n