I saw an online advertisement asking for volunteers to spend post-Valentine’s Day with children who have cancer. One of the activities involved was kite-flying.
I was so excited that I immediately signed up.
Kite-flying was a perfect thing to do during the Amihan (Northeast Monsoon) season. The event was to be held at Bellarmine Field at Ateneo de Manila University.
February 15, the day of kite-flying, came. I saw how children battling with lifetime disease play and enjoy just like normal children. Everything seemed fine. I met one of them and we became pals. We enjoyed a lot of activities.
MY PAL HAS THALASSEMIA
I met 12-year old Ian on that special day. He was diagnosed with an inherited genetic disease called Thalassemia when he was 4 months old. Since then, he had to visit Philippine Children’s Medical Center (PCMC) every month. He usually had fevers and experienced weakness whenever his red blood cell count goes down. He had to undergo blood transfusion, iron chelation and monitoring of his vital organs. His spleen was enlarged.
I may have encountered this disorder when I was still studying in college, but the “rareness” of it didn’t let my brain unlock a memory it. So I did my research. I found out that Thalassemias are a group of hereditary disorders characterized by an abnormal decrease in the hemoglobin content of the red blood cells (RBC), smaller-than-normal RBCs, destruction of blood components, and variable degrees of anemia, according to Brunner and Suddarth’s Textbook of Medical-Surgical Nursing.
Thalassemia causes severe anemia because RBCs are not produced in normal quantity and quality. The bone marrow tries to fight anemia by expanding its tissue to compensate and produce more RBCs. As a result, patients with this disorder have stunted growth, facial and bone deformities, fragile bones, liver and spleen enlargement and limited physical activities – often signs of having Thalassemia Major, a severe form of Thalassemia.
Carriers of thalassemia are perfectly healthy individuals. When both parents are carriers, the risk of giving birth to a child affected with thalassemia is 25%. On the other hand, when only one parent is a carrier, the risk is 0%.
This type of genetic blood disorder occurs worldwide, but the highest prevalence is found in Mediterranean region, Africa, and Southeast Asia.
Thalassemia patients require monthly blood transfusions to survive. However, these extensive, lifelong blood transfusions lead to iron-overload. Extra iron must be removed from the body to prevent multiple organ failure. Iron chelation therapy is done to prevent this.
IAN DOESN’T LOOK LIKE HE’S SICK
While Ian was busy painting his flower pot, I got a chance to chat with his mother. Here comes the inquisitive me!
I told Christy, Ian’s mother, that he looks normal. Christy said that even Ian asks her when he would have blood transfusion. His doctor often reschedules his supposed monthly blood transfusion when he appears OK; his blood tests remain “normal”; he doesn’t look pale.
“What’s his secret?” I asked.
She said, “Hindi ko alam. Siguro hindi siya stressed (I don’t know. Maybe he was not stressed.)”
“Sinasali ko talaga siya sa mga activities (I let him join activities),” was her reply when I asked about how he copes with stress.
Christy mentioned that Ian plays a lot. Sometimes he brings his friends to their house and he cooks for them. He remains happy even if he doesn’t go to school anymore. He gets more stressed when he’s in school.
He has a favorite uncle, who recently died but who liked to travel and used to bring Ian to such places as Avilon Zoo. He’d make sure Ian had his most recent blood transfusion before they travel.
But Ian felt devastated when his favorite uncle died.
SURVIVING IAN
Fun-filled activities continued. There was even a song number from a choir. While Ian was busy having his picture taken with his new pals and riding a fire truck, Christy and I talked about how she pays for her son’s treatment.
Ian comes from a poor family. His parents are separated. His mother sells snacks at City Hall. Having Thalassemia that requires monthly blood transfusion and regular iron chelation was no joke. They had to get funds from external sources because Christy’s earnings were just enough for their food. It was through some senators’ Presidential Development Assistance Fund (PDAF) where they get some help. They also receive sponsorship from a councilor.
In 2010, Ian got hospitalized for dengue fever. He was under close monitoring at the ICU and was given a 50% chance of survival.
But thank heavens, he managed to escape death.
“Talagang survivor ‘yang anak mo (Your child’s really a survivor),” his doctor said to her.
“Iniluha ko ng husto yan. Year 2010 ang worst na nangyari sa amin. (I cried so hard for him. Year 2010 was the worst for us),” she recalled.
“Nagkalubog-lubog kami sa utang (We were buried in debt),” she added.
Just like any parent, she had to work hard for her child. And Ian understands his family situation.
IAN’S KITE
The final activity of the day was happening. Ian, the rest of the children and I learned how to make a kite. And fly one. It was hard. We needed to run against the wind. Mine got stuck on a tree branch but I managed to pull it free. Its red tail remained on the branch. Aww.
Seeing big kites fly so high was so amazing. And my eyes saw how the children with life-long disease run as fast as they could. THERE WAS NO LIMITATION AS TO WHAT THEY COULD DO ON THAT DAY. Even Ian had fun. It touched my heart.
I enjoyed flying the kite with Amihan and some children until sunset. I was thankful that it was a meaningful day. I gave my kite to Ian, my new pal. It had a message for him.
***
Ian may not physically show deformities on his body for now, but we couldn’t remove the fact that he has to be treated for a lifelong disease. Indeed, a lifelong suffering for him. His mother has to double her efforts. There is a known, possible cure for this, and that is bone marrow transplantation. Non-Government Organizations (NGOs) such as Balikatang Thalassemia (Ba-Tha) and Thalassemia Center of the Philippines are, so far, the only institutions able to reach out to these people in our country. But the disease can be prevented if our government can provide a program addressing genetic blood disorders that include tests to identify carriers. You or someone seated next to you could possibly be a carrier.
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