In one of the periodic medical outreaches that our organisation usually organises for children with disabilities, I recently met Jane Namuddu (not real name) in Kinoni, Lwengo District, a mother to a child with cerebral palsy (CP) and she narrated to me this heart-breaking story.
When Namuddu was pregnant with this child, she suspected something unusual with the pregnancy because it took her almost 12 months to go into labour.
Indeed, when she finally went into labour and delivered the baby, from the expression on the doctor’s face, she knew that everything was definitely not okay.
When the baby popped out, he wasn’t breathing and Namuddu was bleeding heavily. The medical team tried to resuscitate the baby but after a few minutes, they gave up because they thought he was dead.
Miraculously, after almost one hour, they realised that he was alive but it took three more hours for the baby to cry for the first time.
The baby was a fighter and he survived his first day, then the next, and the next. But because of complications while still in the womb and difficulties during delivery, he suffered damage to almost every organ in his body and it was apparent that his chances of survival would be minimal.
Two weeks after his birth, Namuddu took her son home but no matter how often she told herself that he would be okay, the facts were undeniable. He couldn’t hold his head up on his own, he had trouble locking eyes, and anything that required the use of his body from the waist down was impossible.
Today, at six years of age, it is clear that the child has a severe case of CP and would likely be in a wheelchair - which Namuddu can’t afford currently - his whole life. And on her part, Namuddu has thrown herself into the round-the-clock job of caring for her father-less son.
Sitting in my hotel room that evening, I felt a heavy weight fall over my shoulders and I couldn’t stop thinking about Namuddu, her son and the 50 other children with similar illnesses that our medical team examined that day.
I remembered the pain, confusion and hopelessness on the faces of those children and their caregivers.
At the same time, I thought about those that never made it for the medical outreach. Those who are shunned, locked in cages or closets, and those abandoned by their families on the roadside in the middle of the night out of fear that they have the devil inside them.
Cerebral palsy manifests differently in different people. Some of the most severe cases make people unable to control their movements, their arms and legs often crooked and they experience deep, uncompromising, constant pain almost every day of their lives.
Therefore, there’s an urgent need to raise community awareness about CP and helping families get early-intervention care for their children. Whereas these people are trapped inside bodies that simply can’t physically work, and are battling every day to survive and thrive in those bodies, we need to show them that CP doesn’t define them.
We may not physically change them but our support may change the whole idea of what CP is and what these people could be. We can lift away their limitations and help them hit their next milestones, whatever they are.
Mr Mukalazi is the country director of Every Child Ministries Uganda. email@example.com