For five-year-old Teresa Njateni, poverty is not just the lack of material things, which she experiences having been born in a poor family. But her health has been poor too, since birth.
She loves to play, and so she drags herself to wherever her playmates are, just like any girl her age would do. However, she usually returns home in people’s arms—unconscious.
Teresa, who lives with her parents in Area 23, Lilongwe, has a rare disease.
“The colour of her skin changes like a chameleon, it can turn purple, pink or whatever,” says her mother, Efiten Tambala.
A Standard Six dropout, Efiten works part-time as a housemaid.
She says her daughter changes colour when tired or happy.
“Teresa’s breathing is noisy and she sometimes gasps for air. She is light in complexion, but she is now pale,” says Efiten.
Dr. Davies Mtontha of Kamuzu Central Hospital (KCH) says Teresa’s condition is cyanosis, corroborating what doctors in India wrote in Teresa’s health passport.
“It means that the oxygen that circulates in her body is sometimes less. That is why her skin changes colour,” says Mtontha, adding that Teresa also has a bigger heart with a hole on it.
In 2011, Teresa was featured on MBC’s Reach Out and Touch programme. Government responded by flying her to a hospital in India. However, on the day of the operation, surgeons failed to operate on her.
“They said her blood was too thick to flow, such that even a cut on her skin would not produce blood. When squeezed, her blood vessels only produced water,” she says.
As such, they were sent back to Malawi to wait for two years.
“The doctors gave us drugs to normalise her blood,” explains Efiten.
The two years expired towards the end of last year. Efiten says since Teresa started taking the drug, she bleeds when she gets cut.
Right now, the family’s only hope is that their daughter will find a well-wisher to sponsor her operation in India.
Unfortunately, Efiten does not know where to go.
“I don’t even know the officials who arranged for my daughter’s medical trip to India. I wish I knew their offices, I would have gone there to update them,” she says.
Meanwhile, she keeps taking Teresa to KCH for periodic check-ups.
However, Efiten is worried about her daughter’s deteriorating health. She wishes she had money to help her daughter’s situation improve.
“I know the operation in India could save my daughter’s life. Since last year, she has been losing weight, which makes her weaker and her breathing difficulties continue,” she says.
Nevertheless, she has enrolled her at a kindergarten.
“I notified her teachers of her fragile health. Teresa’s life hangs in a balance,” adds the mother.
When she goes to school, she also faints sometimes.
“Why my daughter? It pains me to see girls of her age happily leading a normal life!” laments her mother.
But stuck in poverty, there is not much the family can do for their child. They live in a small house built from mud bricks with a muddy floor. Apart from the domestic work, Efiten also sells small stocks of firewood. Her husband sells empty sacks inside Lilongwe Market. Together, they have four children. Teresa is the youngest. The oldest is a boy who is in Form one, while the second born is a 14-year-old girl who is married. The third born girl is in primary school.
Efiten explains that doctors recommended a diet of three eggs, three bananas and a packet of milk every day for Teresa, but they cannot afford it.
“Instead, we feed her on ordinary porridge, vegetables and nsima” says Efiten.
Dr. Mtontha says the foods are necessary for her improved health.
Efiten and her husband say they knew there was something strange about their daughter from the time she was born at Bwaila Hospital in Lilongwe.
“Although she was born with a healthy weight of 3.6 kilogrammes, she never cried at birth,” she says.
Birth weight, according to the Ministry of Health, is an important indicator for assessing child health and their chances of survival. Babies who weigh less than 2.5 killogrammes have a higher-than-average risk of early childhood death.
But Teresa’s problems have revolved around the changing of skin colour breathing difficulties..
“Her blood veins sometimes look green. She started walking at the age of three. She never really showed signs of pain when pinched or injured. That was so strange to us,” Efiten says.
The mother says she will do everything to ensure her daughter’s stay in this world is comfortable.
“I remember someone asking me why I could not just kill Teresa to spare me from all the pain that we go through. I said no, this is a child that God gave me. I will do anything to ensure her stay in this world is as comfortable as possible,” vows the mother.
But others have comforted and supported her. One of the good Samaritans is Pilirani Maweja, who has remained a family friend in need. Financially, Maweja is better off than Efinet’s family, so she helps whenever she can.
“The girl’s condition is serious. Whenever she gets tired or is laughing hard, her skin changes colour. Sometimes the colour change starts from the nose, sometimes it starts from the hands and spreads to the whole body,” says Maweja,
As days go by, Teresa’s loved ones can only hope that someone will come and help save their daughter.