Reflections from Smith – A-BE-C Volunteer, Social Worker 

The Association for Bladder Exstrophy Community in collaboration with Uro Care Hospital, has been supporting children born with bladder exstrophy in Uganda for several years. Three fortunate children from Western Uganda have had A-BE-C sponsored surgeries, one performed in India and two in Uganda. Nakwataho Smith is a social worker who has been an advocate for these children. Recently, he was able to visit Treasure and share more of her story and journey with this lifelong condition.

Treasure is now a joyful three-and-a-half year old and currently has no major health challenges. Although she has not been able to be seen in person in the clinic, A-BE-C has been able to care for her remotely through telemedicine. Generally, she is feeling fine and has not recently complained of any pain. Her family, including her parents and siblings, are also doing well, but they continue to face the usual socioeconomic challenges as a vulnerable, rural household family in Uganda.  

Grateful for Support

Treasure and her entire family are exceedingly grateful and appreciative for the generous support and unconditional love they continue to receive from A-BE-C. The support has changed their lives through restored hope for Treasure, her parents, and siblings. The family recalls, “Before Treasure’s surgery, we considered her as an outcast, a very delicate child to live with. We thought she would not live long, given her condition.”

A Bright Future

Even after her surgery, her parents were worried how they would manage the care needed for Treasure. Given their lack of resources and vulnerability, they weren’t sure how they would handle the complexities of traveling to the hospital for reviews or how to provide the much needed diapers for Treasure. With the continued support of A-BE-C providing transportation to hospital visits, diapers and other medical supplies, Treasure’s family has been able to cope with her condition. Treasure is now regarded as being “normal” by her parents and siblings. Her parents have committed to ensure that Treasure starts school, now that she has the essential diapers needed to keep her dry… until we can get her the almost-completed BE Dry underwear!