The agony of raising children with physical disabilities

Written by  Leonard Masauli

Lydia Nyagondwe Banda (kneeling)  sounds SOS for her daughter (right) and granddaughter, Pic by Leonard  Masauli Lydia Nyagondwe Banda (kneeling) sounds SOS for her daughter (right) and granddaughter, Pic by Leonard Masauli

Lydia Nyagondwe and her husband Pearson Banda of Mwenilondo in Karonga were happy when they had their first-born daughter in November, 1978.

The baby girl, named Safinia, was born strong and charming. Whilst a child, she could not show any signs of sickness up until she turned six and started school.

Surprisingly, things started to change and she complained of severe pain, especially in her legs and arms.

The couple took Safinia to Karonga District Hospital and was referred to Rumphi where the daughter was diagnosed with polio.

After a long struggle to seek medical attention, things became worse.

Her hands and feet were completely bent backwards and she could neither walk nor eat alone.

In difficult circumstances, she uses her mouth to eat direct from the plate.

Following the condition, Banda has been living a difficult life to fend for her daughter.

She cannot join her husband in the field, or run small businesses because her daughter cannot stay alone at home.

At some point Safinia was taken to her aunt’s place to stay with her.

Unfortunately, at the middle of the night, an unknown man took advantage of her condition and broke into the house and raped her.

After some months, the parents noticed she was pregnant and failed to trace the man who impregnated their daughter.

Safinia delivered a baby girl named Memory in 1998.

Like mother, like daughter

Similarly, her daughter Memory grew up strong and healthy.

But when she reached Standard 1, she, too, started complaining of pain in her legs and arms.

Eventually, her arms and legs started to bend and she could no longer walk or do things for herself.

As a family, they tried to seek medication but nothing worked. Today, Memory’s condition is similar to her mother’s.

Sadly, one day, while her grandparents were away from home, Memory crawled to the lake for a bath. On her way, an unknown man took advantage of her condition and raped her.

She, too, fell pregnant and later delivered a baby girl named Sarah.

As Nyagongwe, 65, narrates her story, tears quickly fill her eyes.

She is troubled by the mystery surrounding the condition of her daughter and the granddaughter.

Both cannot do anything own their own. They rely on aging Nyagondwe to cook and wash for them as well as bathe them.

They cannot walk but crawl and bask in the sun as they wait for their mother to prepare them food.

“Sometimes we survive on pigeon peas; if not, then we sleep on empty stomach. As you can see, I neither go out for farming nor do some small-scale business because I cannot leave them alone.

“But what if I die? Who is going to take care of them? It pains me when I see them in this condition,” she says.

Banda says she is looking up to people to help construct a good house for them which can be well secured for the daughters.

“This hut we are staying in is not safe considering their condition and cannot withstand heavy rainfall,” she says.

Reach out and touch

Meanwhile, a group of women from Karonga under the umbrella of Zokonda Amayi recently visited the family and helped with food and clothing.

Chairperson for Zokonda Amayi Karonga Chapter Mercy Mhango said the group heard about the family and decided to help.

“It is really shocking seeing this kind of life for the family. Safinia and Memory cannot do anything by themselves, even taking a bath.

“We sincerely call on well-wishers to come forward to help with anything they can,” said the chairperson of the group which originates from Malawi Broadcasting Corporation (MBC) Radio One’s Zokonda Amayi programme.

“We have brought clothes and food, amounting to close to K50, 000 but these are temporary things and when they finish it would be hard for them to sustain themselves,” she added.

She said if the daughters can be provided with tricycles life would be better for them because they can at least be helped with mobility around their home.

Karonga District Social Welfare Officer Atupele Mwalweni said, with funding from World Bank, her office is implementing Social Cash Transfer Programme which also incorporates people with disability, the elderly and orphans.

“The office is implementing social cash transfer with funding from the World Bank to vulnerable women and children, among others.

“Since March this year, about K228 million has been disbursed to 7, 526 beneficiaries and we are hopeful that people with disabilities are not left out,” Mwalweni said.

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