Parents and care takers of children suffering from Hydrocephalus and Spinabifida have called upon stakeholders to consider revising taxes on essential commodities most especially hygiene products that are a must-have for their patients.
Hydrocephalus, a build-up of fluid in the cavities deep within the brain, drives victims into being dependent and needing extra care compared to other children.
Spinabifida is a birth defect in which an area of the spinal column doesn’t form completely, leaving a section of the spinal cord and nerves exposed.
This kind of defect affects the urinary system; an individual cannot control the flow of urine from the body, experience bowel incontinence, constipation and diarrhoea which requires good hygiene and frequent use of detergents.
Parents contend that although the hiked prices affect all Ugandans, it’s worse on their side since they can’t do without the products, more so control or reduce their consumption.
Ruth Nalujja, the National Coordinator of Spinabifida and Hydrocephalus Association of Uganda (SHAU) says that although there is a great increase in the cost of living, the number of children produced daily with such conditions has not reduced thus the need for an immediate solution.
“The families with these children are required to use not less than a bar of soap in a week in order to keep the children under good hygiene conditions through regular washing of their clothes. If this is not done, people may end up running away from them and develop a negative attitude towards these children due to the stench which they may develop,” Nalujja said.
She also emphasized that most of the parents/caretakers of these children are low income earners with limited financing which can’t enable them to feed the whole family while providing necessities to Spinabifida victims.
“The situation affects these children in a manner that if a parent can’t buy more diapers for them, school life will be hard because after all, teachers will not able to come closer to them thereby missing out on that interaction which is key in any child’s learning experience. Secondly, they feed on a special diet on a regular basis so if the parent is not in position to provide the food, the child will not be attentive in class due to hunger,” she added.
She also underscored the urgency of the affected children to have their full medication, noting however, that the current economic trend might worsen the already tight access to the medicine.
The increased Commodity Prices have affected Ugandans in several ways including affecting their savings to the extent that majority can’t afford them well as the minority who can buy some are left with no savings as it has been in the past.