The Spina Bifida and Hydrocephalus Association of Uganda (SHA-U) has made an appeal for Shs 500 million to construct a larger facility that will accommodate children suffering from Spina Bifida and Hydrocephalus, along with their caregivers.
The announcement was made by SHA-U’s Executive Director, Ruth Nalugya, during a press briefing at the organization’s offices in Rubaga.
Nalugya emphasized the urgent need for a bigger space, citing the increasing number of parents seeking medical care and support for their children at the center.
“Our current House of Hope Centre is too small to accommodate the growing number of parents and children seeking help. Every day, families travel from distant districts across Uganda, many of whom have no relatives in Kampala to support them during their stay,” Nalugya said.
She revealed that SHA-U supports about 240 families annually, not because the number of affected individuals is small, but due to limited space, which hinders their ability to meet the needs of all those living with Spina Bifida and Hydrocephalus.
“When we look at the prevalence of Spina Bifida and Hydrocephalus at the national level in Uganda, it stands at between 6,000 and 10,000 cases per year. As an association established to improve the quality of life for persons living with these conditions, we can only reach about 1,500 families annually, leaving a very big gap in addressing the greater need,” Nalugya explained.
She highlighted that the center provides critical care for children with Spina Bifida and Hydrocephalus, conditions requiring prolonged medical attention.
Parents typically stay at the facility for about four months until their children stabilize, after which they return home. However, SHA-U fully covers the costs incurred during their stay, putting a strain on the organization’s limited resources.
“We need a larger facility to ensure that these vulnerable children and their caregivers have a safe and supportive environment during their treatment. The Shs 500 million will help us construct a well-equipped center where we can provide better care without worrying about space constraints,” she added.
She further noted, “Every year, we are only able to accommodate about 240 families. But if we had a bigger center, we could accommodate more because the need is almost triple what we are currently able to serve.”
Nalugya also expressed concerns about inadequate medical supplies, suggesting that an annual medical supply budget of at least Shs 5 million would help address critical needs.
“We also lack medical supplies. We have inadequacy. So we believe that if we can have medical supplies of at least five million shillings a year, that would help us address key issues that need to be managed at home, especially skin care and continuous management. Children with Spina Bifida cannot control their bladder or bowel, so we require many supplies to help them manage their condition,” she stated.
She further highlighted the need for a Benevolent Fund, noting that the center is often overwhelmed by medical emergencies involving these children.
SHA-U is calling upon well-wishers and organizations to support the initiative through financial contributions and material donations.
The new center is expected to provide not only accommodation but also medical services, therapy, and educational support for children living with these conditions.
Nalugya expressed gratitude to Mom’s Gather for ensuring that mothers and caregivers receive food during their stay at the facility.
In partnership with Mom’s Gather, Liberty Insurance also donated essential items, including children’s toys, food, sanitary materials, and other necessities to support the center.
The center not only provides health and physical support but also encourages mothers of children with this condition to engage in income-generating activities to help them care for their children.
