Thalassaemia major is a genetic condition that affects the production of haemoglobin, resulting in severe anaemia. Treatment options for this disease, which is usually diagnosed within the first six months of life, include regular blood transfusions and bone marrow transplants.
Speaking with Bernama recently, Samsen Thomas said the disease affects his eldest son Shiezell, 12, and daughter Jolie Avril Alvira, 10, who has lived with the condition since she was one.
Jolie had undergone a bone marrow transplant earlier this year, with his youngest son Seanbester – who has thalassaemia minor – as the donor. This means eight-year-old Seanbester is a carrier of a faulty gene from one parent, without symptoms.
“Until now, Shiezell has no matching stem-cell donor in the family and may have to rely on continuous blood transfusions or until a suitable donor is found,” Samsen, 37, explained.
“With the coming Christmas celebration, my wife and I just want our son and daughter to be healthy and be able to live a normal life like other children.”
Shiezell and Jolie have to undergo regular follow-up treatments at a government hospital in Johor Bahru almost every month.
“Jolie has also recently undergone chemotherapy and will have to be monitored for a year, so I really hope her health will improve and she can go to school as usual,” he said.
Samsen, who works as a lorry driver and has been living in Johor for the past 17 years, said his family is not returning to Keningau in Sabah for Christmas this year owing to his older son’s fragile health and the cost of flight tickets.
The last time he returned to his hometown with his wife and kids was in 2019. Still, “our Christmas celebration is lively because three of my siblings also live in Johor, so we usually celebrate together”, Samsen added.
Meanwhile, Shiezell, who goes to school at Sekolah Kebangsaan Skudai Batu 10, has big aspirations and hopes to make his parents happy.
“Studying is fun, especially Malay and English subjects. These are my favourites. When I grow up, I want to be a policeman, and my younger brother Seanbester wants to be a policeman, too.”
Earlier, Petronas brought the entire family to Legoland Malaysia Resort in conjunction with the Christmas celebration.
Through the “Petronas 50 Dreams Uplifting Lives” programme, the Thomas family had the opportunity to stay at the Legoland Hotel, visit the theme park and Sea Life, and enjoy a Christmas dinner.