Good News From Uganda!
With every bladder exstrophy patient there is a story of resilience and hope. A new chapter of young Ugandan Ndyabagye Johnson’s story has been written and we are delighted to to share it.
You may recall Johnson was featured in a post in November of 2016 (Seven-year-old Ndyabagye finally gets a chance at healing). Back then he was preparing to travel to India with his mother for his first surgery to treat his bladder exstrophy condition, as part of A-BE-C’s Global Care Initiative.
Seventeen months and two surgeries later, this new chapter exemplifies resilience, hope and how effective treatment can help people affected by bladder exstrophy help realize their life purpose and potential.
“Am privileged and honored to authoritatively inform that two months now after his second surgery, the Fistula has totally closed and he says he feels very ok now, and he has now fully embarked his academics and he now attends school normally.” – Nakwataho Smyth
Nakwataho Smyth is a social worker who has been an advocate, champion and caregiver for Johnson’s treatment since meeting him in 2016. His thoughtful and heartwarming reflections on his journey with Ndyabagye follow.
Your donations help make Johnson’s story possible. You can support other children needing treatment through A-BE-C’s Global Care Initiative by giving to A-BE-C.
My Journey with Johnson and His Family
I got to know Johnson (Ndyabagye) and his house hold members through USIAD–SCORE project which I worked with as a protect officer/Social Worker in charge of Child protection officer/Family Strengthening and promoting excess to Critical health services, a project that ended in Sept 2017. SCORE is an acronym that stands for ‘Sustainable COmprehesive REsponces for Orphans and other critically vulnerable children [OVC] and their households.
I personally identified Johnson through a health services outreach in their village in June 2016. After a series of inquiries & interaction with his mother Kamahe, I found out that there had been several attempts since his birth to have Johnson’s condition rectified but all in vain & she clearly told me that she had totally lost hope & had give up on Johnson for fate to take its course.
I initiated a referral to Mbarara Regional Referral Hospital (MRRH) the only referral hospital in western Uganda, but still doctors were hesitant to handle Johnson given the magnitude of his complication, until when I was told about Dr. SITUMA MARTIN the pediatric surgeon and the head of pediatric surgery department at MRRH, I brought Johnson to him and he carried out a series of reviews on him to determine the extent of his complication. By the end of it all, Dr. Martin found out that Johnson’s condition was beyond his expertise & capacity, therefore recommended that it required more specialized expertise in pediatric Urology for better management. It’s therefore upon that background that he proposed securing an appointment from his colleague Kenyan Dr who is a pediatric Urologist to come over to Uganda and they work on Johnson in October 2016, a plan that failed due to unforeseen happenings by his Kenyan colleague.
Shortly two weeks after that failed plan, Dr. Martin told me there was a fancy & great opportunity for Johnson to be operated by a team of the World’s best Urologists in India Sponsored by the ASSOCIATION for the BLADDER EXTROPHY COMMUNITY [A-BE-C]. But still Johnson and his mother needed a lot of support from me to enable him tap into that life time opportunity,
With project support, I worked so tirelessly to secure their passports, that is for Johnson and his mother, VISAs and very many travel requirements and needs which they needed that I was able to accomplish by the end of it all. I supported Johnson and her mother in all ways possible, Johnson & his mother were able to fly to India with the help of Mary a mother to one Solomon who had same condition as that of Johnson, they spent close to 3 months in India from 13th/Jan/2017 to March 2017 on full sponsorship of A-BE-C.
The operation was successful but through the healing we realized that he had developed some Fistula which necessitated a need for another surgery to close that Fistula after one year. I did inform the chief Advocate for A-BE-C Ms Janet Gibson about it and plans to have Johnson taken back to India for another surgery ensued, this time round it was only Johnson coming from Uganda that was going back to India for his second surgery unlike the first surgery when 3 children including Johnson were coming from Uganda, this meant that only Johnson & his mother were supposed to fly back to India something that seemed impossible for Johnson’s mother to afford single handedly to fly with Johnson to India given the fact she totally illiterate and thus couldn’t afford to travel without help from some else.
It’s against that background that A-BE-C requested me to help and travel with Johnson to India even when the project had ended and I was simply volunteering to help Johnson and his family, a request which I accepted amidst the many other commitments that I had. I therefore had to sacrifice a lot including my academics to be there for Johnson because I felt he needed me most therefore the rest could wait. I was able to travel with Johnson to India as his sole caretaker at the beginning of this year [Jan 2018] I stayed in India with Johnson for one full month. He successfully had his second surgery that resulted into total closure of the Fistula & construction of the Bladder neck all this was under full sponsorship of A-BE-C.
Am privileged and honored to authoritatively inform that two months now after his second surgery, the Fistula has totally closed and he says he feels very ok now, and he has now fully embarked his academics and he now attends school normally.
On my own behalf, on behalf of Johnson, his family, relatives & friends, we profoundly and immensely grateful for your generous support as ASSOCIATION FOR THE BLADDER EXSTROPHY COMMUNITY [A-BE-C]. we really appreciate your efforts and thank you very much for touching humanity and bringing back the lost hope to the vulnerable people like Johnson, his Family and his entire community.
May the Mighty God richly bless you.
Complied by Nakwataho Smyth