As the baby of a large family, my sister, Sonia, was the apple of everyone’s eyes. Affectionately called “Sunny Sunshine,” her ever-present smile and enormous heart made her easily a favorite sibling and best friend to each of us, and most certainly my 4-year-old nephew’s dream of a mom. Witty and with a wicked sense of humor, she could waft away somber moments with gales of laughter. She entertained us with her humor as much as she educated us on the history of popular culture and music. She could explain obscure factoids such as why, say, Nick Jonas’s song, “Levels” has its roots in the Baroque era or what Usher’s new song is in reference to some random historical event in modern day hip hop. She never failed to fascinate us. Then on August 5, 2015, Sonia died. God is ineffable and one cannot begin to understand why he decides the way he does but there it was — our Sunny Sunshine was gone at 24. A sudden hypoglycemic attack had barreled through her defenses and Type 1 diabetes (T1D) had won.
Sixteen years earlier, when my sister was diagnosed with T1D, it almost seemed like she was the only child in Uganda with the condition. Our parents looked in vain for support groups and medical personnel that understood the condition. Schools had no idea how to handle Sonia and the requisite support and awareness did not exist. We felt alone, and even more critically, my sister felt alone. Our parents diverted all their modest resources to establish a system to support Sonia — she had a doctor, a nurse, a psychologist, a dietitian, a personal trainer and a fully equipped clinic only a few yards from our home. Overwhelmingly conscious of the huge sacrifice our parents had to make for her, a common thread of Sonia’s conversations was how other not-so-lucky children in Uganda could possibly cope.
In Uganda, T1D is a financially backbreaking disease at a cost of at least $700 a year for basic tests and supplies. For a country with an average income per capita hovering around $600, and with 19.5% of the population living below the poverty line, this cost is prohibitive. The struggles of T1D in Africa are vastly different than in developed countries such as the United States. Africa’s T1D mortality rate remains high for several reasons including lack of awareness, insulin insecurity and the hefty cost of treatment. In Uganda, for instance, there are only 4 pediatric endocrinologists in a country of 38 million people, 60% of whom are under 18 years of age. Many children therefore remain undiagnosed, others die without ever seeing a medical professional, and those who do see a health professional, are often confronted with the unfortunate situation that T1D is not on the health index of the diagnosing physician.
The story of 12-year-old Manuela Nyende Wakabi, for example, starts with several weeks or erroneous diagnoses from numerous hospitals to traditional healers before her T1D was diagnosed. By then, her body had gone into a state of severe stiffness that did not subside for months. Other common stories include children being shunned by schools and communities, ousted from homes, and even considered by some to be possessed by demons. While some children with T1D do make it into adulthood, many are burdened with complications because of poorly managed blood sugar levels.
Sonia journalized her dream of one day changing this state of affairs for children with T1D in Africa. As such, the day Sonia joined the angels, it became incumbent on us, her family, to carry out her wish through the Sonia Nabeta Foundation. Because the scourge of infectious diseases makes it difficult for African governments to prioritize T1D, the Sonia Nabeta Foundation will work with governments and other partners to alleviate the hefty cost of treatment and provide holistic mind, body and spirit healthcare for low-income, children under 18 with T1D “warriors” in Africa, starting in Uganda.
Our journey thus far has been paved with small miracles, as if Sonia is guiding the stars, bringing exactly what we need, when we need it. From donations, far and wide, to volunteers that have travelled thousands of miles to help out in Uganda. Thanks to these miracles, this past August, the Sonia Nabeta Foundation unveiled its inaugural programmatic intervention and opened the doors of Camp Tuyinza in Uganda. The 4-day camp that began with a ribbon-cutting ceremony by the Queen of Buganda, Her Royal Highness Nnabagereka Sylvia Nagginda, welcomed 54 warriors and 20 healthcare workers.
Tuyinza, a local word that means “we can do this,” encapsulated the spirit of the camp whose primary goal was to develop knowledgeable, empowered and educated warriors to improve their long-term health prospects; equip them with the requisite tools and products, increase their agency to enable them to create a policy environment that best represents their own needs and a community that is aware, stigma-free and socially supportive. On the horizon for 2017 are two such camps in the north and east of Uganda.
The fledgling foundation may bear her flag and carry the name of my beautiful and joyful sister, but her story is that of countless warriors across Africa, and incumbent on us, are the commitment and resolve to continue to challenge the status quo and stave off what need not be a death sentence for a child.