By Katie Baker

November 28, 2016

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Seven-year-old Johnson finally gets a chance at healing

At seven, Johnson (Ndyabagye) is old enough to understand that his body is different from those of his two brothers. He is old enough to understand that he cannot use the toilet like other children his age. And he realizes that he will not find relief from his constant physical pain until he receives surgery for the bladder exstrophy with which he was born.

Ideally, children born with bladder exstrophy begin the process of corrective surgery in the first year of their lives. But there are no doctors in all of Africa, let alone Uganda, trained to perform surgery for the rare condition. Because of this global shortage, children such as Ndyabagye sometimes live for years without relief from the physically and psychologically effects of their exstrophy.

Johnson lives with his mother and three siblings in Western Uganda. His father passed away last March, leaving nothing behind for his family except a rented two-room house in poor condition. His mother works day and night, and grows what produce she can in a small garden next to her house, but she still struggles to put food on the table for her four children. Access to the specialized medical care her son needs, especially care that requires traveling far from their home, has been out of reach until now.

Johnson can now get the surgery he needs

In January 2017, Johnson, along with a second child from Uganda, is scheduled to travel to India to undergo surgery that will reconstruct his urological structures, as well as his improperly formed pelvic bones. As part of Association for the Bladder Exstrophy Community’s Global Care Initiative, the two children will be under the care of the world’s leading experts in bladder exstrophy and finally get the chance to live a life of less pain.