Inside a large dimly lit room, 17-year-old Kwere Esperance rests motionless staring at the ceiling. 

A smell of medicine and septic wounds permeate the air, suggesting that she has not been out of this room for a long time.

With coiled emaciated legs, Esperance rolls her eyes to catch a glimpse of a visitor, but clearly remains oblivious to the conversation that ensured between me and her caretaker and older sister, Jeanine Kankera.

When I visited the family at their home in Batsinda, a dusty neighbourhood of Kinyinya in Gasabo District, Esperance was resting on her bed with a pack of pampers by her side – an indication that every service is provided for her just their on her bed. Packets of assorted medicines covered a whole table, the only piece of furniture in the room.

Esperance was born a normal child, but for the past 10 years, she has not been able to talk, walk, sit or even eat and drink something on her own. Confined to her bed on account of failing health, Esperance looks like a seven-year-old child yet she is deep into her adolescent life.

"At the age of six she was a fine and happy girl like any other child. However, when she reached the age of seven, she started getting weak on the legs and could frequently fall down,” says Kanyera who is commonly known as Mama Fille in and around Batsinda.

Since then, Esperance’s life has been that of confinement as her situation quickly worsened when she was taken ill in 2007. For more than one-and-a half years, this last born in a family of six battled for her life on a hospital bed after she was admitted to CHUK with paralysed legs. She also tested HIV positive – having been born with the virus that causes AIDS.

Strangely, the girl left hospital at the time when she actually needed medical attention most. By the time Esperance prematurely left hospital, she still could neither walk nor talk. Kankera says the tough decision to leave hospital, even in the face of Esperance’s deteriorating health condition, was dictated by the dire situation at home.

"I am a mother of three children for whom I have to provide food and other basic necessities, so we could not stay in hospital further even though it was necessary to ensure that Esperance’s life improved,” said Kankera.

As a compromise, doctors taught her how to administer medicine to the sick girl and also dress the chronic wounds on Esperance’s back caused by body heat resulting from years of lying in the same positions.

These days, Kankera takes her patient to hospital once a month for routine medical examination and to collect free anti-retroviral drugs.

With the girl’s medical condition showing no sign of improvement, Kankera has been advised to seek re-admission to CHUK, but that will mean abandoning her three children, for whom she is the sole provider. Yet no one, other than her, can take care of Esperance if admitted to hospital because of the terrifying wounds on her backside that need regular dressing. Changing Esperance’s pampers is also a very hard job that is not meant for a faint-hearted person. 

"I have therefore chosen to manage the situation from home,” she says in a resigned tone.

Yet Kankera is optimistic that her youngest sister, the last born of her late parents, would improve and live a fruitful life if only properly managed in a hospital environment. Doctors, she said, recommend a hard mattress and some kind of physiotherapy to unlock stuck knee joints. They also recommend a balanced diet, comprising of fruits and drinks. All these necessities are, however, very hard to come by.

Appeal

Medication alone, without proper feeding seems to be taking a big toll on Esperance.

"She is taking very strong drugs yet the feeding is very poor. She needs good food and plenty of drinks, but we cannot afford,” says Kanyera.

She wishes there was any organisation that specialises in handling children who suffer from her sister’s illness. She calls for help to be able to afford basics such as food, drinks and toiletries which she says only come in whenever a well-wisher passes by. 

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Children born with HIV

There are more than 300,000 babies born with HIV in the world every year, according to Michel Sidibé, the Executive Director of UNAIDS. Most of them die by the age of two if hey don’t receive proper medication.

HIV infections in children dropped by 43 per cent from 2003 to 2011, UNAIDS said in its World Aids Day Report, 2012. This is on account of increase in the use of antiretroviral drugs among HIV infected pregnant women.

"When women living with HIV receive antiretroviral prophylaxis during pregnancy, delivery and breastfeeding, the risk of HIV transmission is reduced to less than 5 per cent,” the report says.

It is estimated that antiretroviral drugs prevented 409,000 children in low and middle-income countries from acquiring HIV infection.

In Rwanda, transmission rate of HIV from mother to child is at 6.7 per cent, but the government wants this reduced to below 2 per cent and eventually totally eliminated with almost all health facilities providing services to prevent mother-to-child transmission. It is estimated that more than seven in every 10 pregnant women can access these services.