Cerebral palsy: Nyasha’s story of hope

03 Dec, 2021 - 00:12 0 Views
Cerebral palsy:  Nyasha’s story of hope A rare smile: Nyasha in the wheelchair she received from well wishers, with her mother Mrs Violah Matongera.

The Herald

Rumbidzai Zinyuke-Senior Health Reporter

A wide smile spreads across her face at the sound of her name.

Oblivious to everything else around her, 17-year-old Nyasha Chiripasi ’s captivating smile is her only amour in a world where she can do nothing else.

She has cerebral palsy, a condition that causes physical disability mainly in various areas of body movement.

The condition is caused by damage to the motor control centres of the developing brain and can occur during childbirth or after birth up to the age of three. Essentially, it is a disorder that affects the development of movement and posture and is characterised by multiple impairments and functional limitations.

For Nyasha, the condition has left her with limited use of her body.

Save for a few excited groans and grunts, she cannot speak, walk or make voluntary movements.

Living in Saziya village, a remote part of Chimanimani, the Chiripasi family has not been able to afford treatment for Nyasha or even a wheelchair to make movement easier for her caregivers.

Mr Steven Chiripasi, Nyasha’s father said the family had faced a lot of challenges in taking care of their daughter.

“We never realised that our child had a problem when she was born in 2004 at Mutare General Hospital.  But as time went on, we started seeing that her leg was not developing in a normal way and we took her to the hospital but nothing changed. We relocated to Chimanimani in 2005 and we realised her condition was becoming worse. Her body was weak and that is when they told us she had Cerebral palsy,” he said.

“Life has been difficult, her mother would carry her around on her back because she could not sit or walk. We could not afford a wheelchair for her.”

So for 16 years, Viola Matongera, Nyasha’s mother, had to carry her on her back for them to go anywhere.

People with disabilities make up around 15 percent of the global population and this proportion is higher in developing countries largely due to the cyclical relationship between disability and poverty.

It is estimated that about 1,4 million people have some form of disability in Zimbabwe.

Cerebral palsy is the most common physically disabling paediatric condition globally and its prevalence in Zimbabwe is estimated to be at 1.55 per 1000 in rural areas and 3.3 per 1000 in urban areas.

For families like Nyasha’s, poverty has made it difficult for them to access treatment and other services they would need to make her life bearable.

But last year, God smiled on the Chiripasi family. During an outreach programme at Saziya Clinic, Nyasha’s mother met with Dr Tapiwa Nyamangodo, who was to change her daughter’s life.

Dr Nyamangodo is leading a team of health experts working with communities in Chimanimani and Chipinge under the Zimbabwe Idai Recovery Project, where they offer integrated health services to survivors of the devastating cyclone Idai.

The services are offered in the form of mobile health outreach programmes taken directly to the communities.

 “I met Nyasha last year when her mother came to one of our outreach programmes at Saziya. She is a surviving outcome of one of the 3 delays in seeking obstetric help and or care that is prevalent in the settings her family comes from. 

“She has contractures on the major joints on her upper and lower limbs. Her motor skills are not developed at all. Yet she smiles at you broadly and very easily when you call her name. Sadly she had no acute medical issues an outreach team could offer on the day,” said Dr Nyamangodo.

Nyasha’s mother had only gone there with the hope that the doctor could somehow assist her daughter since they were offering free services.

 Dr Nyamangodo said he explained the condition to her mother and told her that he would not be able to offer treatment to her child on that day.

But he did promise to get back to them through the local clinic should he get linkages to disability care and assistance for the family.

“I saw three cerebral palsy patients on this day, but mai Nyasha’s trust and expectation on what a doctor could have done for her daughter still makes me feel empty deep inside,” the doctor said.

A call to some of his friends saw Dr Nyamangodo manage to secure a wheelchair for Nyasha which has since been delivered to her family. The wheelchair has brought a rare smile to the mother’s face, which is usually tense because of the worry for her child.

“I am grateful to Dr Nyamangodo and his friends who helped us get a wheelchair for Nyasha. Now I can put her in the wheelchair and move around with her easily. In the past we would put her in a dish and wrap her in some blankets to support her,” she said.

While the wheelchair has been a great help, Nyasha still needs help.

She needs surgery to correct the permanent tightening that has occurred on her muscles, tendons, skin, and nearby tissues that causes the joints to shorten and become very stiff and prevents normal movement of a joint or other body part.

“The ideal situation is perhaps we continue looking for linkages and pathways, public or private, that may one day help Nyasha undergo the surgical procedures to correct the contractures on her major joints. She needs to undergo physical therapy so that she gains some use of her limbs, her family needs to undergo some psychotherapy so they manage to give her the support she so requires and most of all; that she gets assessed for a possible education appropriate for her disability,” Dr Nyamangodo said.

The issue of psychosocial support for caregivers remains an integral part of addressing the challenges being met by people living with disabilities.

Although every child is a source of joy to the parents, their special needs may add to the emotional, physical and financial strain inherent in raising children, particularly in under-resourced settings.

After helping Nyasha, Dr Nyamangodo said he had called a senior paediatric colleague about the cerebral palsy cases he had witnessed in Chimanimani and Chipinge and the answer he got was “I call it the Chipinge Disease”.

This could imply that the prevalence of cerebral palsy in this area of the country is high. While there is no immediately available data to support this, evidently, there is need for research into whether this is a neglected area of medical practice in Zimbabwe.

It could help to inform policy on disability issues as well.

Zimbabwe has made progress in addressing the marginalisation and discrimination of persons with disabilities through the crafting of the National Disability Policy which seeks to empower them to improve their quality of life.

But despite this, the Covid-19 pandemic has deepened pre-existing inequalities and people with disabilities remain one of the most excluded groups in societies.

As the country joined the rest of the world in commemorating International Day of Persons with Disabilities on Friday, there is still hope that with continuous engagement and interventions, more will be done to promote the rights and well-being of persons with disabilities at every level of society and development.

Hopefully the country can then begin to see stories of children with disabilities being among the most marginalised and excluded groups becoming fewer and families like Nyasha’s getting the help they need.

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