EIGHT-YEAR-OLD Hudhayfah Nishan Ali was given five years to live after being diagnosed with the life-threatening beta thalassemia major, an inherited blood disorder, at just four months old.
Hudhayfah began having blood transfusions since his birth in 2008 and test results confirmed the disorder six months later.
“It took a lot of time as the blood was sent to Australia since there are no laboratories in Fiji to do blood analysis to determine thalassemia,” his mother Zulfara Nisha said.
“We asked about the cure and were told that there was no cure, but to have regular blood transfusions for the rest of his life.
“The doctors said in Fiji, the life of such a child was more or less five years.”
Individuals with beta thalassemia major usually present, within the first two years of life, severe anaemia, poor growth and skeletal abnormalities during infancy and could lead to heart failure when left untreated.
Ms Nisha said the news crushed the family, who were faced with the heavier burden of having no institution or expert in Fiji that they could turn to for support and information.
“There was no haematologist (specialist dealing with blood and blood diseases) in Fiji and by now our son was 20 months old and due to a lot of blood transfusions, his iron level was very high.
“We needed iron extraction medicine, either a pump or tablets, but sadly this was also not available.
“In Fiji they have an injection which is given to a thalassemia patient once, after a blood transfusion, but this was not so effective.”
The family continued to contact doctors around the world and was told that a sibling donor with a 100 per cent match was needed.
They later came in contact with the International Center for Transplantation in Thalassemia and Sickle Cell Anaemia.
“We were informed that there was a newly invented protocol 30 to treat thalassemia patient and this was our miracle, because in this protocol a parent donor is used to do the bone marrow transplant.”
The family moved to Italy in 2010 and the transplant was conducted in June 2011 at the IME (International Center for Transplantation in Thalessemia and Sickle Cell Anemia) hospital. Hudhayfah’s was one of only 55 such operations in the world.