Tuesday 8 November 2022

*Aman is a 12-year-old girl from Dongchak Primary School in Duk County in Jonglei state. She is the third born in a family of six siblings.  *Aman is the only one of her siblings who can barely see.

*Aman has been suffering from an infection on one eye since she was just a year old. Every day *Aman felt some itchiness on her eyes. She would rub and scratch on the surface of her eye with gradual pain and discomfort. While at home, she could hardly do anything or even play with her siblings.

“When we are playing, my younger siblings would bully me and refuse to involve me in any of their games so that I can also play,” *Aman said.

Every morning, her five siblings would leave home to go to school and this made *Aman feeling isolated.

“One day, I decided to follow them to school, because I also wanted to learn,” she said.

*Aman enrolled in Nursery at Dongchak Primary School. Her mother could not stop her as *Aman was passionate about school and getting an education.

“When she sees her siblings preparing to go to school, she would also wake up and prepare herself to follow them. So, I let her do what she wants,” said Ayen Aguek, *Aman’s mother.

 Over time, *Aman’s sight begun to deteriorate as the infection started spreading to her other eye.

“If something is written on the blackboard, I  struggle a lot to write it on my exercise. The worse part of my day is that my classmates would laugh (bully) at me if my work is marked poorly,” *Aman said.

*Aman’s home, Duk County is located on the western edge of Jonglei State. It borders Panyijiar County, Unity State to the west. The main livelihood activities in Jonglei state include agriculture, rearing livestock, fishing and foraging for wild foods. Additionally, cattle raids, livestock diseases, crop pests and drought are major factorsaffecting livelihoods.

There are no official statistics or comprehensive information on the number of children or people with disabilities in South Sudan. However most estimates suggest that it is likely to be at least as high as the global estimate of 15%. A few household surveys have found similar percentages of people with disabilities within households.

Children with impairments in these household include those who have long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder full and effective participation in society on an equal basis.

The school attendance of children with disabilities varies from 21.9% to 24.3% according to a 2013 survey conducted by the Ministry of Gender, Child and Social Welfare. 

Although Article 29 of the South Sudan Constitution obliges thegovernment to provide access to education for all, children in Aman’s village in Duk County still lack necessities to achieve their dreams. It lacks healthcare, and the transport routes are annually affected during the rainy season.

The general lack of safety nets for families in the area makes it hard for *Aman’s mother, Ayen Aguek to afford any form of medical care for her children. She said *Aman’s sight has affected her performance in class and she often feels rejected.

"Sometimes, she listens when the teacher is teaching but to write what is on the blackboard is very hard. She can’t concentrate on the blackboard because of too much sunlight, and the bullying by her classmates also disturbs her a lot. This contributed negatively to her performance in school,” Ayen explained.

The Sustainable Development Goal (SDGs) number four guarantees equal and accessible education by building inclusive learning environments and providing the needed assistance for persons with disabilities. To ensure *Aman receieves an inclusive and quality education, Education Cannot Wait through the Multi-Year Resilience Programme (MYRP) conducted an assessment to identify children like *Aman who are struggling with impairments and require urgent support. The Christian Mission for Development [CMD], a MYRP implementing partner, worked with the Duk County Education Department in Jonglei state and identified 30 children with special needs. *Aman was among the children who would benefit from assistive devices for inclusive education intervention.

Education Cannot Wait in South Sudan

The ECW-MYRP program – being implemented by Save the Children, Norwegian Refugee Council and Finn Church Aid and partners and in collaboration with the Ministry of General Education and Instruction – provides inclusive and safe access to quality learning opportunities for crisis-affected girls and boys across six states in South Sudan. It further aims to boost retention and ensure learning continuity for schoolchildren and enable them to complete their education cycles and transition to the next levels. Partners like Christian Mission for Development [CMD] focus on increased access to learning opportunities, improved quality and continuity of education, enhanced school safety, mental health, psycho-social support, gender and inclusive education. CMD is supporting schoolchildren with disabilities with assistive devices across Duk County, Jonglei state.

During the assessment, *Aman’s family was told that their daughter had trachoma complications that requires immediate eye surgery. It is a disease of the eye caused by infection with the bacterium Chlamydia trachomatis. Eyelashes may be drawn in so that they rub on the surface of the eye, with pain, discomfort, and permanent damage to the cornea.

According to the World Health Organization, trachoma is a public health problem in 44 countries and is responsible for blindness or visual impairment of about 1.9 million people. The eye disease is common among preschool-aged children, with prevalence rates, which can be as high as 60–90%. 

To ensure 12-year old *Aman doesn’t go completely blind, CMD worked with Majook Peter, a Clinical Officer at Padiet PHCC who referred *Aman for specialized treatment in Juba, the capital of South Sudan, where there are better medical equipment.

“If untreated, blindness from trachoma is irreversible. That’s why we need to urgently help this little girl call *Aman so that she can continue with passion her for learn,” Majook Peter stressed.

In September 2022, *Aman and the six children left Duk for Juba on a chartered flight that took nearly two hours. This trip was the only opportunity for *Aman and her peers to undergo corrective surgical procedures. This was also the first time any of these kids had left the boundaries of their village. They were accompanied from Duk by Tabitha Nyadieng, the Gender and Inclusion Officer at CMD.

While in Juba, *Aman and her peers were taken to Buluk Eye Clinic where they met Malish David Emmanuel, the Medical Officer for Ophthalmology and Cataract Surgeon at the clinic.

The children underwent two days of medical assessment to determine the level of infections and the procedures required.

"Some of these children require eye operations, while others require ear operations, and some need corrective surgical procedures,” Malish said.

For *Aman, the doctors believe the situation was worsened by attempts to alleviate the pain caused by the trachealis - or inverted eyelashes. They say man people suffering from trachoma resort to pulling out their eyelashes leading to both eyes getting affected, and the scaring may lead to irreveersible blindness.

On the third day, *Aman underwent her first surgical procedure. The two procedures recommended by WHO include bilamellar tarsal rotation (BLTR) and posterior lamellar tarsal rotation (PLTR).

“The procedure to correct trachomatous trachealis is meant to prevent blindness,” Dr. Malish said.

After a day of recovery, *Aman said she could see. The doctors took her through some word tests to see if she can read from a board far away.

“I can see. That is A, B, C,” an excited *Aman exclaimed.

All the children, including *Aman received medical check-ups, eye surgeries and other related corrective procedures for either recovery from partial disability (partially blind or deaf) or being prescribed assistive devices to cope with their condition.

"Two of the children underwent corrective surgeries on their eyes, four who were partially deaf have been successfully treated, except for one child who has a complex disability, which requires more check-ups,” said Peter Pal Chuol, CMD Project Field Supervisor.

Upon completion of their treatment, the children were flown back to Duk in a chartered flight to be reunited with their families.

Joseph Eluzai Mogga, Education and Child Protection Manager at CMD said: 

“Our MYRP team dedicated immense resources (time, personnel, money) to ensure this is a success for the children. The generous funding from Education Cannot Wait is changing the lives of children whose education was on the verged of being ruined by disabilities.”

Story: CMD

Contributor: Daniel Danis/Save the Children

Editor: Beathe Øgård/Save the Children