Rare disability that hits boys

26 Jul, 2015 - 00:07 0 Views
Rare disability that hits boys The condition is known to affect 1 in 3 600 boys

The Sunday Mail

In the space of three years, Knowledge’s young brother Tawanda started developing the same symptoms. By then, Knowledge was 10-years-old and Tawanda had just turned seven.

Two weeks back, The Sunday Mail published a story on Ambuya Petronella Mutasa (49), from Epworth, who has seven disabled grandsons from four different daughters.

The condition is known to affect 1 in 3 600 boys

The condition is known to affect 1 in 3 600 boys

Many suspected that the 49-year-old grandmother’s family was cursed because every baby boy born of her daughter had permanent disability.

After the publication of the story, it has since emerged that what seemed like a “curse” is not necessarily confined to the Mutasa family, but many other families appear to be facing the same problem as trans-general in Odzi.

The condition is medically known as Duchenne Muscular Dystrophy and affects males only, whereas females are carriers. Which explains Mbuya Mutasa’s scenario. But hers is not the only family to have been hit by the condition, there are many others.

DMD is known to affect 1 in 3 600 boys. Sharing almost the same plight as Mbuya Mutasa is Mrs Naomi Saumani-Gwizo, who bore four sons with no visible disabilities, but to her shock, she witnessed them turn to cripples, one after the other, on reaching the age of six.

As a result, Ms Gwizo has since been ostracised by her community and her husband sought another wife.

Her younger sister, Mirriam Saumani-Chisuka, also gave birth to four children: two girl and two boys.

The girls were born without any disabilities, but the boys later developed the same disability also after the age of six. Before the two sisters gave birth to the disabled sons, their mother also gave birth to four sons.

However, of the four sons, only two of them are disabled.

“My first son Knowledge was born with no signs or symptoms of any physical disability. I raised him well without any complications. However, when he turned six years a lot of strange things started happening to him,” said Mrs Saumani-Gwizo

“It all started when he was doing his Grade Zero. One day he just came back home from school walking with his toes. Seeing him like that, I just thought maybe he got injured while playing at school,” she narrated, looking at her now 17-year-old son Knowledge, who now uses a wheelchair.

Knowledge sat in the wheelchair with the support of a blanket as he can not sit straight on his own. His legs are abnormally small and his feet are permanently bent. His shoulders are visibly slanted, while his hands stick close to his chest.

“The strange way of walking continued for about a week and that’s when it got my attention. When I examined him, I noticed that his calf muscles were swollen and had hardened,” she continued.

“I went with him to a local clinic and the nurses gave him some creams that are normally applied by athletes with swollen legs. Nothing changed. Eventually, Knowledge just stopped walking. The scenario made me believe that my son had been be-witched so I went to spiritual leaders for assistance, but nothing changed.”

Mrs Saumani-Gwizo said her son also stopped going to school because of his condition which required a lot of attention.

In the space of three years, Knowledge’s young brother Tawanda started developing the same symptoms. By then, Knowledge was 10-years-old and Tawanda had just turned seven.

Mrs Saumani-Gwizo started seeking help from traditional leaders who told her that she should sacrifice some cattle for her children to become normal again.

“One of the traditional leaders told me that one of my forefathers had stolen an animal from a hunter’s trap, hence the hunter had set this spell on our family. In order to reverse the spell that was affecting my family, the n’anga told me to sacrifice three cows on his altar,” she added.

“When I gave him the cattle, nothing changed. This then got worse as the following year my youngest son, Learnmore, also turned six-years-old and developed the same strange traits. He became disabled that same year.”

In 2010, she got pregnant hoping to give birth to a baby girl, but unfortunately it was to another boy Courage, now five. He, too, is slowly developing the same symptoms.

In 2012, Mrs Saumani-Gwizo then decided to visit District Outreach for Care and Support (DOCAS), a non-governmental organisation that assists disabled people in Odzi districts.

The organisation currently cares for 11 other boys with this rare disability and a girl with a similar disability. These children are attended by volunteer caregivers who give them basic primary education, feed and dress them. However, during school holidays the children are taken by their parents until schools open.

Founder of DOCAS, Reverend Tongora Mapingure, explained that the condition that was afflicting the children was Duchenne Muscular Dystrophy (DMD).

“Mrs Saumani-Gwizo’s case was the first case to be received at our centre. We did a research with doctors from three hospitals after which we found out that it was DMD,” said Rev Mapingura.

“While attending to Mrs Saumani-Gwizo’s three sons, we noticed that her younger son Courage had started hardening his calf muscles and sometimes he uses his toes when he walks. His younger brother, Progress, who is only four years carries the disability although it has not yet manifested.”

“We conducted further research on the condition particularly on the Saumani family and we discovered that Mrs Saumani-Gwizo’s mother, Joyce, had two sons with exactly the same condition.

“Joyce’s mother had two brothers with the same disabilities and one of them is now late. The other one died recently when he was 69 years. In her first marriage, she gave birth to three daughters: Naomi, Mirriam and Chido.”

Mirriam got married and gave birth to Blessing (15) and Allan (7) who are disabled. However, her first born, Carol (17), who is a girl does not have any form of disability.

Rev Mapingure added: “In her second marriage after her husband passed away, Joyce gave birth to four boys and a girl. Of the four sons, Trymore Mandimutsire (now late) and Farai Mandimutsire (21) were the only ones affected with the condition.”

“Unfortunately, when we discovered about Mrs Saumani-Gwizo’s disabled half-brothers, Trymore had died the previous year and Farai was only 19- years-old. He is now 21-years-old.

Although there is no known cure for the condition, the best treatment for sufferers is regular physiotherapy, which could be out of the reach for many. Besides the condition affecting muscles, most of the sufferers are competent intellectually.

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