Undaunted Spirit Despite Dual Diagnoses

In June 2023, Tawonashe Mugura, a fifth grader with sickle cell disease and type 1 diabetes, expressed his gratitude for Solidarmed-run PEN-Plus clinic at Masvingo General Hospital. Photo ©ATM.

As an infant, Tawonashe Mugura was always in and out of the hospital. Sometimes, he had difficulty breathing; other times, he was jaundiced. His body pains were so severe he cried constantly. The provincial hospital in Masvingo, Zimbabwe, treated his symptoms, but he still lacked a diagnosis.

Then, when he was nine months old, an aunt provided a critical clue: Three of her grandfather’s siblings had died of sickle cell disease. A test confirmed Tawonashe’s diagnosis.

Treatment for sickle cell reduced both Tawonashe’s crying bouts and hospitalizations. The hospital pharmacy did not have the needed medication, though, so his mother, a university assistant administrator, and his father, a primary schoolteacher, bought it from private pharmacies. The more than US$30 they spent monthly on medication alone represented more than a tenth of their combined income.

“The hospital bills and medication costs meant we barely had enough food for the family,” said his mother. “We couldn’t afford to pay for Tawonashe’s medical expenses and sustain the family.”

Tawonashe’s parents occasionally missed doses or underdosed their son to stretch the medicine for a few more days. He would be hospitalized several times a year with severe joint pain, difficulty breathing, abdominal pain, anemia, and chest pain. Those visits usually corresponded with the times he lacked adequate dosing.

In 2022, after presenting to the hospital with diabetic ketoacidosis, a potentially fatal condition, Tawonashe received a second diagnosis: type 1 diabetes. Fortunately, with insulin treatment, he was able to stabilize.

“Sometimes Tawonashe gets angry when his friends ask him why he goes to the hospital so often,” his mother said. “One question that broke me was when he asked why he was sick, yet his siblings and friends were always healthy. Apart from those moments, though, he’s positive and happy.”

In June 2023, Tawonashe enrolled in the PEN-Plus clinic at Masvingo Provincial Hospital. The clinic provides him with continuous pharmaceutical support, including hydroxyurea for his sickle cell disease, insulin for his diabetes, and pain medications. The nurses educate him about his illnesses, and he receives free routine laboratory and radiology tests.

“With this treatment, we hope to reduce both his sickle cell complications and his hospitalizations in general,” said Dr. Alvern Mutengerere, project manager for noncommunicable diseases at SolidarMed, the implementing partner for the PEN-Plus clinic in Masvingo. “Tawonashe is exactly the kind of patient for whom PEN-Plus was designed.”

PEN-Plus, an integrated healthcare delivery model, was originally designed in Rwanda in 2006 to provide lifesaving care to children and young adults living with severe, chronic noncommunicable diseases in extreme poverty. Nearly two dozen countries are now pursuing the model in collaboration with the NCDI Poverty Network. In addition, 47 member states of the World Health Organization’s African region have adopted it as their official strategy for treating people with severe NCDs.

“The PEN-Plus clinic has been a silver lining in our lives,” said Tawonashe’s mother, Stella Mugura. “I feel we got another chance to breathe. And I am thankful for our education about sickle cell; I thought it was a death sentence, but now we have hope.”

Tawonashe’s mother added that the clinic has relieved their financial pressures.

“PEN-Plus has lifted a huge burden from us,” she said. “The extended help from SolidarMed and the clinic reminds me of the meaning of my son’s name. In English, Tawonashe means ‘we have seen God.’ Indeed, we have seen God in our lives; thank you.”

Tawonashe—now ten years old and attending fifth grade—echoed his mother’s gratitude during a recent conversation at Masvingo Provincial Hospital, adding, “My dream of becoming a doctor will succeed because of PEN-Plus.”

Ten-year-old Tawonashe Mugura joins his mother, Stella, in talking about his dual diagnoses of sickle cell disease and type 1 diabetes.