Rare Disability Haunts Beitbridge Family

TWENTY-year-old Musiiwa Sibanda has never enjoyed life like people in his age group.

By Nhau Mangirazi recently in Beitbridge

He hardly walks but crawls as he manoeuvres his way around the yard and other destinations due to a condition called Dystonia which has been haunting him since birth.

To make life tough for Musiiwa, his wheelchair bound young brothers Adam aged 15 and Misheck aged 12 also suffer from the same condition.

Both are attending school at Chenmanga primary school five kilometres away, they cannot walk due to a rare health condition called dystonia.

Dystonia causes movement disorder in which a person’s muscles contract uncontrollably. According to scientific explanation, the contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures.

Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia affects about 1% of the population, and women are more prone to it than men’ says an online explanation.

For the Sibanda family in outlying rural village under headman Mabhidhi, Chief Sitauze , the condition has given the family sleepless nights. It is genetically passed on from their mother Mavis Sibanda’s family.

Mavis has since left the kids in search of greener pastures in South Africa and she passed the disease to her three boys as they are now affected.

 

Double tragedy

The trio suffers from double tragedy after their father divorced their mother over their disability ten years ago. By then, Musiiwa could not walk on his feet but rather used toes.

“The father openly told her that he could not withstand Musiiwa condition as he could not walk when he was ten years old. To make matters worse, his younger brothers Adam and Misheck were showing these signs at tender age,” explained Mavis’s mother Dairesi Makina aged 87 years.

Ironically, the trio’s mother has no signs of the diseases that affects their muscles from the neck, and legs making it impossible to walk.

They became paralysed forcing them to crawl from one place to the other.

Musiiwa looked deformed, shabby in tattered dirty clothes. Their sister 18-year-old Thsianeyo is heading the family.

She was not around when we visited the family homestead recently.

Thsianeyo’s four-year-old child is showing these signs as he cannot utter a word and is battling to walk on his feet and uses toes instead.

Beitbridge education district under Leaner Welfare Services, School Physiological and Special Needs officer Andrew Munikwa, said he was touched by the Sibanda boys’ plight.

“This is a child headed family and the condition is deteriorating daily. This is an isolated and unique case where three grown up boys within a family are affected. Their sister’s child is showing such signs as well and may soon be affected,” said Munikwa.

Save the Children program manager under Beitbridge district Sherpard Zvidzayi confirmed they have been working through community development participation through awareness campaigns on disabled children.

“Generally, whenever there is disability in a family, it is attributed to bad omen. This results in family breakdowns where women are accused of being trouble causers,” he explained.

Save the Children positive image

However, Save the Children, through its inclusive education program came to Sibanda boys’ aid.

They donated three wheelchairs, a noble gesture that has seen Misheck and Abel attending lessons at nearby school.

“We have supported awareness with community leaders, parents, child protection committees and other stakeholders. It has brought positive image to the disabled children, some who had been dumped and neglected by relatives,” he added.

Munikwa said the district has several cases of disabilities but with limited properties and resources to cater for their needs.

He said Matabeleland South province faces challenges to help children with disabilities.

“We only have Beitbridge Mission school but has limited resources. Through the support from Save the Children, these boys are enjoying education as a basic human right,” said Munikwa.

Save the Children communication specialist Sophie Hamandishe said they are working with implementing partners including Ministry of Education for Quality Learning Environment (QLE).

Children emotional protection

“Ideally, we focus on learning environments to ensure children’s emotional and psycho-social protection. We have assisted children with disabilities by giving them wheel chairs, and supporting buildings of learning facilities that accommodate them. Education is a basic right to any child, disabled or not,” she said.

Save the Children is operating in eight districts covering Mbire, Beitbridge, Gokwe South and North, Binga,  Rushinga and Nyaminyami.

 

 

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