Josephine Nakiberu is seeking financial help to take her son, Kevin Vianney Kasumba, for a pulmonary valve replacement in India, come January 2025.
Kasumba, a primary five pupil at Little Royals Junior School – Kasangati, was diagnosed with pulmonary atresia (congenital heart defect where the valve that moves blood from the heart to the lungs does not form correctly) at five months of age.
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When a child has pulmonary atresia, it means that instead of a valve that opens and closes, a solid sheet of tissue forms. Therefore, blood cannot travel its usual path to get oxygen from the lungs. Instead, some blood travels to the lungs through other natural passages within the heart and its arteries. This condition is life-threatening and requires surgery to repair the heart and medicines to help the heart work better.
“Five months after Kevin was born in 2011, I noticed that he had blue lips and nails and experienced difficulty in breathing. I was advised to take him to Uganda Heart Institute (UHI) where an echocardiogram was done. This scan revealed that he did not have a pulmonary valve and required UGX 50M to have one placed,” Nakiberu recalled.
As if to add salt to the injury, visiting cardiologists at UHI reported that her son would not survive and she should just wait for his death.
Without hope, she hardly sought medical help in 2012. Consequently, Kevin’s condition worsened to the extent that he had frequent fainting episodes. Visiting specialists from Global Treatment Services, a reputable healthcare provider in India, told the distraught mother that she needed $10,000 (about UGX 37M) for Kevin’s operation in India.
Through an aggressive fundraising campaign steered by Mama Tendo Foundation and a fundraising committee led by Joan Mugenzi, these funds were secured. Kevin underwent a successful nine-hour operation at Manipal Hospital-India in 2014.
The duo was advised to return for another valve replacement in 2024. However, Kevin was immediately admitted to Intensive Care Unit (ICU) after that operation because it was discovered that he had a narrow throat and a hole between the two pumping chambers of the heart, a condition medically called Ventricular Septal Defect (VSD).
To correct the narrow throat, Kevin underwent an operation costing $5000 (about UGX 18.5M). In the meantime, Nakiberu was advised to correct the VSD after a year. Through the stewardship of Action for Disadvantaged People (ACDIPE); UNRA; Mama Tendo Foundation and Observer Media Ltd, among others, funds for the second operation at Narayana Hospital were secured. Bank of Uganda provided the air tickets.
The operation was successful and Kevin started to walk unaided.
Since his first operation, Kevin has been steadily improving save for the past two months where he has been battling endocarditis, a bacterial infection that inflames the lining of the heart valves and chambers. Everyday, the family has been spending up to UGX50,000 on medication. Moreover, he vomits frequently, has constant flu and no appetite.
Nakiberu is now seeking $20,000 (about UGX 75M) for a second pulmonary valve replacement at Manipal Hospital in India. She is appealing for help to raise these funds so that Kevin can have a normal life like his peers. Financial assistance can be channeled to:
Tel.No: 0773620727 (Registered in names of Josephine Nakiberu) OR Centenary Bank Account Number: 4070430024780708 registered in names of Nakiberu Josephine.
