PLEASE NOTE: This post was written by Voice staff member, Keo Chenda. Chenda is a Case Manager at Voice and works closely with hundreds of clients in crisis including our families affected by the life-threatening blood disorder Thalassaemia. Chenda assists Voice clients with Thalassaemia to access the professional healthcare they need to survive by organising blood drives to receive blood donations, facilitating blood transfusions, supporting families with transport and accommodation to enable them to get to hospital, and empowering families to improve their income and livelihoods
When I am able to provide lifesaving blood to our clients with Thalassaemia, it makes me feel very happy. I went to visit the Sorn family and check in on their situation at the hospital. I met them in a room with eight other families who were waiting to see the doctor. The Sorn family consists of father, Sorn Samnang, 39; mother, Morn Samith, 37 with 4 children: Sorn Vicheka (M), 12, grade 5; Sorn Nary (F), 10, grade 4; Sorn Liza (F), 8, grade 1, Sorn Sam Oeurn (M), 6, grade 1. This family is in a difficult situation – both in their livelihood and health. All four children have Thalassaemia Major, a genetic blood disorder that limits the body’s ability to create healthy red blood cells. The family needs to travel back and forth from their home in the countryside to Phnom Penh in order to receive a blood transfusion for each of their 4 children every month. Without blood transfusions, their bodies cannot carry enough oxygen to their organs. The children feel tired, breathless, lethargic, and faint. Left untreated, a person with Thalassaemia Major has a life expectancy of 5-15 years old. Thus, Thalassaemia patients must receive blood transfusion every month. (For more information on Thalassaemia, see our Projects Page.) Sometimes families are not in a desperate situation, but still find it incredibly difficult to find blood donors for their monthly transfusions. In Cambodia, a patient must prove that someone has donated blood on their behalf in order to receive a blood transfusion. If a family travels from the provinces, it’s likely they will not know anyone in the city who can give blood for them.
Each trip to Phnom Penh costs the Sorn family at least 200,000 Riel ($50) for transportation and food, excluding medical services. They own around 0.5 hectares of rice paddies for rice cultivation. The success of rice cultivation fluctuates based on the environment, and about two and a half years ago, negative impacts such as flooding and drought caused the parents to look for different work. The parents migrated to Thailand illegally by paying a broker to help them cross the border. They worked as construction workers and fruit pickers. While the parents were in Thailand, the children were taken care of by their grandparents. The grandparents are older and not in good health. After two years, the grandparents could no longer look after the children or bring them to Phnom Penh for blood transfusions. Vicheka, Nary, Liza and Sam Oeurn did not receive blood transfusions for more than half a year while in the care of their grandparents. Their father said his 4 children tried to use Khmer traditional medicine for Thalassaemia treatment during the period when nobody brought them to NPH in Phnom Penh. The parents decided they must return home to look after the children.
After I heard about this, I let their father know that he must bring them to the hospital as soon as he can. Otherwise, his children will feel the complications from Thalassaemia even more. I was so sad that they did not come to get blood transfusion for so long. The main problem was that they tried to use Khmer traditional medicine instead. This is what we were so worried about, because we know these medicines didn’t help them. I told him not to believe that Khmer traditional medicines can treat it. I explained that there is no evidence from a medical institution that has revealed that these medicines can get rid of Thalassaemia. The only thing they can do is to get blood transfusion on a regular basis as their doctor recommended. Mr. Sorn told me he doesn’t “know how [he] can find blood, because [his] relatives can only donate occasionally, not as often as they need to come to get blood transfusions”. I informed him that Voice staff will strive to recruit and collect blood for his four children through a monthly blood drive.
Since moving back to Cambodia, their life has been more difficult. Their father has only found work as a farmer and porter. He can only earn 350,000 riel ($87.5) a month, while his wife cannot work because she is busy taking care of the children and the grandparents. The family delayed coming to Phnom Penh until three months after they returned from Thailand due to lack of money. They need to borrow money – 160,000 riel ($40) from the neighbour each time.
Seeing this difficult situation, Voice contributes $15 for transport and meals every time they travel to Phnom Penh to receive a blood transfusion in order to offset the costs. Voice staff try to collect blood for the day they’ll come to get blood transfusion base on the doctor's appointment. Mr. Sorn says, “I am very happy and grateful that Voice always tries to help my children both with some money for transport and food, and providing blood. If we didn’t have help from Voice, my children would be in trouble and they’d be confronted with more difficult challenges”.
Names have been changed to protect the privacy of individual