4-year-old boy with blood disorder needs lifelong, expensive treatment
Zaq Exzikel Pascubillo
Marinel Fernandez was still grieving over the death of her daughter in January 2020 when she had to deal with another blow. Her youngest child, 1-year-old Zaq Exzikel, was diagnosed with beta thalassemia, a blood disorder that can lead to life-threatening anemia.
“At first, I noticed that he was very pale, like a sheet of bond paper. And even though he was already 1, he couldn’t stand on his own,” Fernandez told the Inquirer.
The diagnosis was made after repeated visits to a children’s clinic in their home province of Albay, where the doctor, who noted the boy’s low hemoglobin levels and small-sized red blood cells, referred them to a pedia hematologist.
She and Zaq went the next day to Philippine Children’s Medical Center (PCMC) in Quezon City where a hemoglobin electrophoresis test confirmed that he had beta thalassemia.
“My mind was blank. I was thinking I had lost a child, and now this. I suffered from depression and anxiety that drove me almost to kill myself. But I held on to God even during the time I was questioning Him. I told myself I needed to be strong and live for my kids,” Fernandez said.
Since being diagnosed, Zaq has regularly undergone blood transfusions once a month at the PCMC as part of the lifelong treatment for his ailment. Afterward, he is given Desferal (10 vials at P200 each) to counteract the iron overload in his body—a side effect of the blood transfusions. For this, Fernandez said she spends around P12,000 for the monthly procedure and Desferal, transport fare, and other expenses at the hospital, including COVID-19 swab tests.
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Before every transfusion, Zaq also needs to undergo some laboratory tests: CBC (P450), and crossmatching with blood bank processing and antibody screening (P5,277).
Every three months, there’s the serum ferritin exam (P906) to measure the ferritin level in his blood, in addition to creatinine (P360), ALT (P262), AST (P228), bilirubin (P484), SGOT (P314) and SGPT (P354). Lastly, there’s a 2D Echo test (P4,000 plus) which doctors require every six months on top of an annual abdominal ultrasound.
Aside from the tests, Zaq must also take maintenance medication consisting of Exjade (oral iron chelator) twice a day with each tablet costing almost P641.28 each, folic acid syrup (P228 per 120-milliliter bottle) and Vitamin E for his liver enzymes (P338.25 per 30-capsule bottle).
Fernandez said that as a solo parent, she is entitled to seek assistance from the PCMC’s Malasakit Center. She also asks for help from lawmakers and local government officials as her main source of income comes only from online selling.
“I sell used clothes via liveselling on Facebook. What I earn helps pay for Zaq’s medical expenses and my two other children’s needs. I am often in debt but what is important is that I am able to pay off what I owe in installments,” she added.
Despite her difficult financial situation, what keeps her going is the fact that despite his illness, Zaq looks like a normal, healthy, 4-year-old boy.
“I let him enjoy his childhood just like other kids because I don’t want him to think that he’s different from other kids, although I am more careful with him compared to his siblings. Right now, my other concern is his obvious fear of needles and I’m trying to figure out how to help him get over his trauma because his condition requires lifelong treatment,” Fernandez said.
Those who want to help Zaq can deposit their donations in her Landbank of the Philippines account (account name: Marinel D Fernandez) with account no. 3616 0468 79. She can be reached at 0915-8725798. —STEPHANIE R. ASUNCION
