In October 2019, we shared this story on Facebook of a nine-year-old girl living with spina bifida whose mother has had to fight alone to care for her. Our friend and partner, Ambrose Ganshanga, of OURS and Hope for Children with Disabilities, shared this update on Jackline’s progress:
Progress story gathered during a home/school field visit by the therapist on March 18, 2020
“Jackline is now 10 years old. Her current health condition is stable and she is able to participate in all daily life activities with minimal support. However, she is unable to practice clean intermittent catheterization (a necessity for her life) while at school because of social factors and poor sanitary facilities at the overcrowded rural school. She has developed pressure sores on lower limbs because of daily maneuvers to use inaccessible structures at the school. The school has no services for nursing care.
During the visitation, the family was trained on how to care for her present pressure sores and
continence management materials were supplies. The school was also visited and issues which are affecting Jackline’s learning process were discussed with her teachers.
Jackline is one of the few lucky children with disabilities in Uganda who are able to access schools. Studies on the state of children with disabilities (CWDs) in Uganda shows that only 9% of CWDs are able to attend schools (UNICEF, 2016). During field visits, many children with spina bifida were found isolated in their homes, as siblings [attend] schools and parents go out to work. Wheelchair users are the most affected [according to data gathered by Ambrose Ganshanga].
The mother said she is happy to see Jackline actively participating with others both at home and at school. However, she was worried that Jackline presents with recurrent urinary tract infections every time she is taken for review. She also fails to attend school whenever the mother feels [too] weak to carry her. This has affected her class performance. “My wish is that Hope for People with Disabilities center is completed soon such that my child can join a center where she loved and supported to learn but also to live a healthy life,” says the mother.
“I thank Papa Ambrose for visiting me at home and [at] school. I would also like to visit him in Mbarara where I can meet with other children with disabilities and staff who understand my condition. Here at school, I have to stay in Pampers for the whole day because I have nowhere to practice catheterization from,” said Jackline [during their visit].
This activity was done a day before the country lockdown due to the COVID-19 situation. Our hope is that by the time schools are reopened, ‘Hope Inclusive Centre’ will be open to give Jackline and other children a chance to develop their abilities in an accessible environment.”