Parents of Hemophilia Child Form Disease Awareness Association

Audio 1

8-year-old Jovan lays still At Mulago Hospital's Children's ward, suffering from Haemophilia, an inherited bleeding, or coagulation, disorder.
According to health experts, Children with hemophilia lack the ability to stop bleeding because of the low levels, or complete absence, of specific proteins, called "factors," in their blood that are necessary for clotting. Proper clotting of blood is important because it helps prevent excessive bleeding.
But Jovan is suffering from hemophilia type B, the least common and the most severe. He is unable to play with ease, because any minor injury could result in blood loss, that can last for days or even weeks.
Gazing in the open as if to search of answers about his condition, Jovan sets his eyes to the ceiling and mutters to himself, iGod help me so that I do not die like himi. He is referring to one of the children just across his bed, who has just died after losing a battle to a heart complication.
Stella Komuhangi, Jovan's mother says the disease that has denied his son the fun of childhood was first diagnosed when he was just four years. Since then the family has to part with more than 100,000shillings for constant medical reviews.
There is no known cure for hemophilia, but medical experts say it can be controlled with regular infusions of the deficient clotting factor. At the moment Jovan relies, on a blood extract, because his parents are unable to secure a blood clotting factor. Komuhangi says that the factor is very expensive and can only be accessed from the United States of America and India.
//Cue in: iIts hard to get#
Cue out: #.not been easy.i//
Faced by the reality of their son's plight, Komuhangi and her husband Augustine Sewungu, both teachers have formed an Association to raise awareness about the plight of children suffering from hemophilia.
Kyomuhangi says that Jovan's survival will depend on the response of well-wishers.
The World Hemophilia Federation estimates that between 30 and 40 million people worldwide are suffering from hemophilia.