IT IS truly amazing when a community comes together to help save a life. Jeremy Fabela, aka Kagayan Pyur Panit who I featured in my column before as one of our town’s most prominent barefoot runners, got in touch with me to help raise awareness for Baby Arba Namalata. She suffers from the most toxic liver disease, Biliary Atresia. He, along with One CdeO Runners, is holding a solidarity fun run for her benefit on April 15. This is a literal “run for your life” or in this case, a baby’s life.
Biliary Atresia is a rare condition where the liver and intestines are disconnected. This causes the bile secretions to accumulate in the liver, consequently leading to chronic liver failure. It damages the liver until it could no longer function, and in the advanced stage, it requires a liver transplant. Baby Arba at 10 months old, now needs a liver transplant.
I was surprised when Jeremy told me that he did not know the family of Arba personally. A common friend was tagged by the baby’s mother in her FB post, which is why it appeared on Jeremy’s newsfeed. He said: “We are not even FB friends. But at that time, when I read the story, it’s as if someone pinched my heart. I said, Lord, I want to help, pero limited ra man ako resources, what must I do? Somehow, the answer was right under my nose. Gamiton nako ang power ng social media!”
It was a heart-rending FB post of Mary Ann—the anguished mother fighting for her child’s life—that caught Jeremy’s attention; so he thought to himself that he was going to post the same thing. Arba’s mother shared that she was a healthy baby, passing all the newborn screening tests with flying colors. She had jaundice (yellow skin) a few months later, but the health workers at the government center said that it would go away with sun therapy exposure. But at 5 months, Arba’s grandfather pushed for an appointment with a specialist because her stomach was too big. It was there that they learned their baby had this fatal disease. As of date, Arba is taking 9 medicines to prolong what little-liver function she has left.
Ann said: “My baby’s only cure is to undergo a liver transplant, and the best time for that procedure is 1yr old. Thankfully, her daddy is a match for organ donation. Arba is doing her part by taking all her medicines. Imagine, 9 different types since she was 5months old. And somehow, it’s as if she knew she needed them because she would always open her mouth. I tasted some of them, and they were not yummy. But my baby drinks them without any struggle!”
She added that there are facilities in the country that could help. She said: “Here in Manila, we have St. Luke's and Medical City that both conduct this transplant procedure, but the cost is 5 million pesos. We did some more research and we found a hospital in New Delhi, India, with good facilities and the rate is 2 million pesos. That is so much cheaper, but it still expensive for us. We are just ordinary Filipino workers who don’t have millions stashed away. How sad that quality health care is cheaper in another country, but even then, we still can’t afford it. Sa Pilipinas, kung wala ka talagang pera, mamamatay ka.”
Jeremy shared that it was this message that compelled him to set-up fund raising efforts for the child. He said: “At first, I was disappointed because no one noticed my social media posts. It would only get less than 5 likes. Later, I was able to touch-base with Armando Tonido, the president of One CdeO Runners. He has more influence, and thankfully, he said yes to helping out. And this solidarity run event was born!”
Baby Arba’s moms candidly said they are really desperate. She explained: “As of now, as part of our fundraising we started the can coin for a cause, raffle for a cause, zumba for a cause, and soon, T -shirt for a cause. Now, there’s this run for a cause. In this bigger fun run event, we are hoping that we'll encounter a foundation whose advocacy is to help a rare disease. We really need to raise awareness and, above all else, we need help. I am sure we are not the only parents struggling like this. We are thankful to Jeremy, that even if we don’t know each other, he is willing to do this for us.”
Arba is turning 1 this June 22 already, so the clock is ticking. Time is running out! As of now, they’ve only raised 200 thousand pesos. They need 1.8 million pesos more so they can push through with the operation. Jeremy told me, “Even if we aren’t close, naka-dare nako to get in touch with you to help write about this. We need a lot of media mileage for this event, and I know SunStar can reach more people than my own personal FB page. A part of me wishes someone influential like President Digong can see this, so we can really give this baby a fighting chance. I know that our goal is morag suntok sa buwan, but with God, nothing is impossible.”
We are knocking on your kind hearts to help this baby out. They accept donations via Palawan Express through Mary Anne Maranguis-Namalata and her phone number is 0905-958-7181. For more information regarding the solidarity run call 0926-566-2550; registration is free, assembly is at 430am at Kiosko Divisoria, and just bring whatever amount you can share. You can also get in touch via FB: Scisuss Kimozave. Please include Baby Arba in your prayers and share this post so we can reach more people. Altogether, with God’s grace, indeed impossible becomes I’M POSSIBLE.
For comments and suggestions for this writer, hop-on over to www.orochronicles.com