Living with bladder exstrophy in Uganda: Johnson’s story continues

Ugandan bladder exstrophy patient, Johnson, and his family

A-BE-C representatives receive a warm welcome from Johnson (second from left), his mother Jennifer (second from right) and his two siblings.

The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ago.

You may remember first reading about him in 2016 as an untreated bladder exstrophy patient in constant physical pain. After two successful surgeries, last year’s “good news” post reported Johnson was no longer in pain and that he was going to school for the first time. Now we learn of his success in school, his friends, as well as his current challenges in this report from Executive Director Pamela Block.

Update on Johnson in Uganda: A wide grin and new football moves

The A-BE-C team traveled to the small Western Ugandan village of Bushenyi in September 2018 to visit Johnson and his family. We were greeted with the bright smile of Johnson’s mom (Jennifer) as she stood proudly behind the counter of her new store. Johnson was also there with a wide grin and his two siblings. Others in the village soon gathered to watch Johnson show off his new football moves with some of his friends.

New football moves.

Johnson shows off his new football moves with some of his friends.

After purchasing some bananas, avocados and other supplies, we were invited into their family home and Johnson’s school. We had an opportunity to learn how life has changed since Johnson’s two surgeries in India. I noticed Jennifer had a peace of mind about her that wasn’t there before. Tears of pride and joy streaked my face as I told her how much I admired her courage to leave her small village and travel to India in order to give Johnson a better life.

I was equally moved as Johnson expressed with clarity, well beyond his tender age of eight years old, how his life is different now. He shared with us what was good; he no longer needs to sleep in a ball to protect his exposed bladder, he is able to attend school, and he can play with his friends.”

Staying dry and dealing with bulling

But he also expressed confusion and hurt. Why is he still wet? Why do some kids still bully him? What does his future hold? We know there’s more work to done. Perhaps more surgeries down the road and more support to help him navigate the social realities he will likely face. But they know that they are now part of a larger community and they know they are no longer alone. And together, we will help Johnson realize his greatest life purpose and potential.

Pamela Block, September 2018

School uniform and bike

Johnson expresses with clarity well beyond his years how is life is different since the surgery for his bladder exstrophy.

Thank you for your support

This and other stories of hope wouldn’t be possible without the support from our A-BE-C community. We thank you for your continued dedication to our mission to help children and families around the world.

A-BE-C team and Johnson family.

A-BE-C team members Pamela Block (left) and Janet Gibson (third from right) with Johnson (orange shirt) and his family in 2018.

November 27th is Giving Tuesday!

November 27th is Giving Tuesday, a global giving movement, and we will again ask for your support to continue this important work. Please mark your calendar, share these stories with your friends and family, and remember how fortunate we are to have the care and resources available to provide for our children. There will be opportunities for everyone in the community to become involved. On that day please plan to make a donation of whatever amount is right for you.

Set-up your own campaign and ask your employer about corporate matching

You can also set up your own campaign and approach your employer about a corporate match program. Most importantly, please watch for and share Giving Tuesday posts and emails with your friends, colleagues, and family, and encourage them to support the Uganda initiative.

Your support helps families around the globe

Despite the glaring discrepancy of care and resources, families from around the world who have experienced bladder exstrophy experience the same emotions. There is always fear and isolation that goes along with this diagnosis. There’s always a stigma associated with this condition. There is always a feeling of being overwhelmed, of not having enough information, and of having to educate others.

We are all connected, and we can help provide support and hope to those who have none.