In Mwazisi area under Traditional Authority Chikulamayembe in Rumphi, a family of eight members live a life veiled in strange disease.
The entire family is visually impaired.
At the time of our visit to the family, we found a boy who was preparing food, probably for lunch.
It was around 11 in the morning but the sun was already scorching hot.
The homestead has two houses surrounded by a plantation of tobacco.
We learn that this is not their field and that their land is just about 50 by 40 metres.
We meet Andrew Munthali, an older member of the family, who lost his sight when he was three years old.
Munthali said his late father could see slightly but her mother has total visual impairment.
He said when he was born he was told he could see properly until when he reached the age of three.
As if it were a fashion of some sort, his seven siblings are also visually impaired.
Andrew has now four children; three of whom already lost sight except for lastborn daughter Promise, who is seven months old.
However, the fear is on the same; she might lose her sight.
“The third born is Hanna. She is three years old now and she is visually impaired. She was born normal; she was able to see up until when she turned three. That is when she lost her sight. Of course, I have a letter from the (Rumphi) district hospital to take the child to Blantyre for an operation. I am mobilising money for that,” he said.
Taking care of his family is by ‘grace of God’, he said.
“Apart from my family, I also have to take care of my brothers and sisters including my mother. We simply do piecework. That is what we depend on. The good thing is my wife sees properly and it becomes easier.
“We have gone through several surgeries, all of us. Save for me, I am able to blurry see a few things when there is not much light but I also have a white cane which helps me when walking,” he said.
His brother, John, 48, said at first the family thought it was a cataract but several surgeries proved them wrong.
“Of course, when we were young, our parents were afraid to take us to the hospital for fear of the operation. So in my case, I lived up to around 10 years, then my uncle invited me to his place at Chirambo here in Rumphi.
“There, I had an opportunity to start school. I learnt up to Standard Seven and teachers were amazed. I was then taken to Ekwendeni School for the Blind where I did well with my Standard Eight national examinations. I was then enrolled to St Augustine Community Secondary School in Nkhata Bay,” he said.
John then got an opportunity to study at Mulanje Vocational Training School where he learnt, among other courses, business management.
He thinks getting support for business and venturing into commercial agriculture would help them alleviate some of the challenges the family is facing.
Her mother nearly shed a tear when she thought of how the children were raised, especially when his husband died in 1995.
“It was not easy, I just thank God I am alive and the children are also in good health,” she could not speak much.
To some extent, the family holds that the disorder is somewhat more mystical than biological as surgeries have failed.
But they still have hope.
Commenting on the disease, a medical practitioner Dr Zaziwe Fatsani Gunda said it could be a group of diseases inherited from their parents—inherited retinal diseases—which need a number of tests.
“There are a number of diseases that could be associated with this such as retinal detachment diabetic retinopathy, epiretinal membrane glaucoma, among others. But in this case, it could be inherited retinal diseases. The problem is once a baby is born, it cannot be prevented unless the baby is not yet born. In the present, the family needs to conduct several tests, high tests for that matter,” he said.
In 2022-23 national budget, government has allocated K100 million to empower persons with disabilities through a Disability Fund.
However, in the previous budget, the same amount was also allocated but no single penny was spent despite numerous people with disability struggling to make ends meet.
Federation of Disability Association of Malawi (Fedoma) Rumphi District Coordinator Oliver Kajiso Gondwe said it is worrisome that families such as the Munthalis are struggling when the duly budgeted for money cannot be utilised.
Gondwe said they, as Fedoma, do not have any funds to help such people but they depend on government and non-governmental organisations to support people with disabilities.
“It is worrisome because I have never seen anybody in the district let alone in the country benefitting from that fund. It’s really sad because if you go in the villages, people with disabilities are really struggling to make ends meet while someone in some office is sitting on the money such as the Disability Fund, which could help us,” he said.
Ministry of Gender, Community Development and Social Welfare spokesperson Fred Simwaka said they did not spend any penny from the fund last year because there was no board.
Simwaka said now that the board was instituted, measures are currently being put in place to provide guidelines on how the fund would be used.
“Once we finalise the measures, people will be informed on how they can go about to access the fund,” he said.
As of 2018, Malawi had 1,556,670 persons with at least one type of disability; with 49 percent comprising those with difficulties in seeing, according to National Statistical Office.