04-year-old Cerinah has never crawled nor sat upright in her life. She can only sit with the aid of sitting frames, and when they are not available, she becomes more vulnerable. According to Beatrice, her mother, Cerinah was born pre-maturely at 07 months at her parents’ home in Mpongo, Mityana District. Her mother rushed to Mityana Hospital to be incubated, but she failed due to the exorbitant fees that were quoted. She was advised to do it at home.

“This is where my girl got this disability from,” she says, “because after the two months of incubation at home had elapsed, we began treating her like a normal baby but she never developed at the same speed as other children. At 04 months she couldn’t sit on my lap, her neck was very weak. I knew there was a problem.”

Her father, John Wasswa talks struggles that he has gone through to see that his daughter gets well. “We were first informed that it was witchcraft, so we took her to shrines but there she never got better,” he says. “We tried pastors, sheikhs – everyone we were advised to see but Cerinah’s condition never improved. At two years, we gave up and accepted God’s decision that she would be like that for the rest of her life.”

Beatrice credits Cerinah’s improvement on advice she received from one of the area Village Health Team member attached to the Safe Motherhood and Child Disability Project who advised the couple to take their child to Mityana Hospital.

“We were given sitting frames and told that they would facilitate her sitting and standing postures and relieve her from sleeping all the time,” Wasswa says. “We were also taught on how to exercise her limbs to make them active, and since we began doing this there has been great improvement. Cerinah’s neck is not as soft as it was – she can sit and hold it firm, her right hand fully feeds her and moves, and her feet can now rest on the ground fully as she sits.”

Cerinah with her parents at their home in Mpo ngo, Mityana District

In this long and painful condition for any parent, Wasswa is thankful for the Safe Motherhood and Child Disability Project interventions. “It were through their efforts that I got to know how best to help our daughter,” he says. “True the process is long, painful but there is hope. It’s just that as a parent I feel sorry when exercising her limbs because she cries in pain and I relax but Cerinah would be far better now. I pledge to keep going because I see great improvement in her situation following our visit at the hospital.”

Cerinah is one of the 01 in every 10 children who are born with a disability in Uganda. Many times, the knowledge gap in detecting and managing child defects in our societies means that the situation of hundreds of children worsens because they caregivers are not well equipped on what to do to better these children’s lives. The Safe Motherhood and Child Disability Project funded by PORTICUS seeks to address this gap, training health workers in identifying and managing child defects at birth, and Village Health Teams in identifying children with disabilities in societies and referring them for care at hospitals and other centers of excellence like Katalemwa and CORSU Rehabilitation Hospitals.