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Bojo, A Story of Community

By Emmanuel Kisembo
Originally PUBLISHED on
diabetesdaily.com
January 18, 2019

I grew up in Kajjansi, a major suburb of Uganda’s Capital, Kampala. My beginnings although not wealthy, were comfortable with no real worry in the world. Like many city slickers, my purview was limited to Kampala, Entebbe, and Jinja–any town outside these 3, might as well have been another country. I lived what I retrospectively consider a privileged life. Today is December 21, 2018, and as I ride down from Arua, I am in gratitude and reflection because it took a momentous, life-changing event to clear my vision and for me to find my raison d’etre.

On January 9, 2012, after an agonizing 2 weeks on oral and intravenous quinine for malaria, followed by a week on ciprofloxacin for typhoid and a final week on metformin, an orally-administered medication for Type 2 diabetes with the sole goal of bringing down the unrelenting 33mmol of glucose in my blood, I was diagnosed with Type 1 diabetes (T1D). I emerged out of this diabetic ketoacidosis haze, a brand-new man. I knew my life had changed forever and the journey as a Type 1 diabetes warrior was afoot.

Eventually, in my quest for information, knowledge and support groups for the condition, I found the Sonia Nabeta Foundation (SNF).

Now on my way back to Kampala after 4-days in Arua, where SNF hosted Camp Ecora, it all makes sense. Of the 56 warriors that descended upon Camp Ecora, I was in charge of 9 warriors in Team Tchala. Of the nine warriors, 9-year old Patrick Bojo illustrated the critical importance of a T1D community where the person right next to you is an instant friend because they understand the physical and emotional granularities of the condition that you live with each and every single day.  

Bojo was born in South Sudan where the war-torn country forced his father and paraplegic mother to flee to the Morobi refugee settlement in Northern Uganda. In December 2016, when Patrick’s battered body was experiencing what I had gone through 4 years earlier, his parents, already grappling with the woes of refugee status, left him at an orphanage in Adjumani, hoping to give their son his best chance at life. At 7, Bojo had experienced more trauma than most of us ever do in a lifetime and yet, here he was at the door of an orphanage, taking on more traumatic experiences because T1D was this massive unknown. Nobody knew what to do.

God, however, hadn’t given up on Bojo. DeeAnn Reader, an American lady, walked into Bojo’s life and a diagnosis was made. Even still, Bojo was not out of the woods because the insulin which he needs to live is frequently out of stock at the proximal Adjumani general hospital. To compound this issue, equipment for his care at the hospital is non-existent, and the capacity of medical personnel is limited. For two years, Bojo survived on the supplies DeeAnn provided when they were available. Constantly in search of sustainable care for Bojo, DeeAnn contacted SNF where Bojo was enrolled into Camp Ecora.

This past Monday, when Bojo checked into Camp Ecora, with Rosemary, his caretaker in tow, he was withdrawn and often tearful. As SNF camp counselor, my primary objective for day 1 became–get one word out of Bojo, a smile was ancillary. Having achieved the one word, I slowly worked to weave his unique thread into the tapestry that had become Team Tchala. It’s day 4; the Tapestry is complete. Bojo has found his color and his color is resilience. This is Bojo on Day 1, and this is Bojo at the close of Camp Ecora. Bojo walked away from Camp Ecora with life-saving syringes, insulin, strips a glucometer, a notebook full of how-tos, friends to lean on, a spirit full of hope and that ever elusive smile.

Community is everything.

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