The traffic in Kampala, the sprawling capital of Uganda on the northern shore of Lake Victoria, is a tangled mass. Like a ball of yarn wrapping in and out of itself, it becomes worse the harder the mass of humanity tries to pull through it.
I’m stuck in the middle of it late on a Thursday night. My 14-year-old daughter sprawls sleeping along the bench seat behind me, while our kind driver Elisha practices the patience required of man behind the wheel in a large African city.
As the van inches along, I reflect on the past few days venturing through the countryside in the much less crowded city of Gulu in the country’s north. Gulu was our true starting point on this adventure, where we’ve come to learn how people here live in the shadow of Type 1 diabetes. In the spring, I’d read about the death of a vibrant young woman in Uganda named Sonia Nabeta who, after living with Type 1 for 16 years, was taken suddenly by the disease. Hypoglycemic shock can come fast and if not handled quickly and properly, it can be devastating, as Sonia’s family knows all too well.
It was her sister, Vivian, who wrote the article I read on a site called Beyond Type 1, explaining how in the wake of grief that followed her sister’s death, she created The Sonia Nabeta Foundation. The goal is nothing short of awakening the people of Uganda and her African neighbours to the truth behind Type 1. Even among healthcare professionals, the signs and symptoms of Type 1 often slip past the diagnostic radar. If the children ever make it to a clinic or hospital, they may be treated for malaria or many other afflictions instead of being offered the lifesaving insulin that they so desperately require.
The Sonia Nabeta Foundation seeks to change this through education and advocacy but, most importantly, it seeks to fill a void that will emerge in 2017 when critical funding through Changing Diabetes in Children (CDIC) stops flowing. At present, CDIC out of Kenya provides clinics like the one I was at in Gulu with the insulin and glucose monitoring supplies that keep 25 children connected to the clinic alive. There are no doubt countless others who have never been diagnosed and will quietly slip away after their blood sugar rises to the point of diabetic ketoacidosis.
But right now, those served by the clinic have a chance.
Kids like Mokisa Jonathon, a boy of 7 from South Sudan who now lives with his grandmother. The war that flares throughout his homeland and the lack of insulin there sent him south. His mother remains, for she must earn a living and she can’t work in Uganda. The biggest challenge Mokisa’s grandmother faces at present isn’t the one-an-a-half hour trek to Gulu for his supplies, nor the day-to-day management of rising and falling blood sugar levels (which is a universal challenge for all who have Type 1). Her greatest worry is the tears he cries every day when the other children go to school, for he is not welcome there. The teachers don’t understand the disease; they may think it’s contagious or they simply don’t want to be responsible for something they don’t understand, so he’s not able to attend.
Mokisa wants to be a doctor, he says, so he can help people. He wants to learn like all the other children. He will die in a short amount of time, his kind nurse Sarah says, if he can’t get access to insulin. All the children will.
We also met Patrick Okema, who was diagnosed three years ago at the age of 17. Patrick spent the first half of his life in a refugee camp with his mother and brother. His father, a sergeant in the military, died of TB when he was a baby and after his death, his mother lost much of the protection of the extended family and the threat of rebels attacking the villages forced her into the safety of the camps. An older brother died as well and now, with the knowledge he’s gained since his diagnosis, Patrick suspects it was Type 1 diabetes that killed him.
Patrick, a slight, young man with an easy smile and a sharp mind, planned to study electrical engineering before his diagnosis. After he came to terms with the reality of life with diabetes and overcame thoughts of suicide, he changed his focus. We first met him at the hospital where he was doing his clinical hours as part of his nursing training. He and his close friend Gimmy later toured us through the nursing college where they live and study. Patrick plans to become an endocrinologist and change the way the medical profession in Uganda approaches diabetes.
Patrick will die without his insulin in 2017 if a sustainable plan to replace CDIC funding isn’t secure.
As we crawl slowly through the snarl of Kampala traffic chaos on a Thursday evening, these thoughts fill my mind, and my heart is heavy. I knew the intentions of the Sonia Nabeta Foundation were pure and the need great, but I had to look into the eyes of the children here and hear the hopes and fears of their parents and grandparents to truly understand the urgency.
My 10-year-old son was diagnosed with Type 1 last fall and every day my family and friends are thankful to live in Canada, a country where all the support we need is available. Elijah, my son, is thriving – he wants to play in the National Hockey League and Max Domi, a fellow Type 1 diabetic, is his favourite player. He plays baseball, his disease is balanced and if something changes and he needs medical attention, it’s never far away. Death from Type 1 in a country like ours is a rare thing.
It should be a rare thing everywhere.
These children here in Uganda, brimming with such resilience and potential, should not face the prospect of death when the solution to their disease is right before our eyes.