This is little Rome. He’s turning 5 on Nov. 18. Innocent and young as he is, he is not spared from the gripping pain caused by bleeding. Rome is among the handful of Filipino boys with Hemophilia B. Little Rome is in the hospital right now after he started bleeding on the right knee yesterday. As a Hemophilia B sufferer, he needs Factor 9, a harder to find and more expensive factor concentrate.

The sad thing about Filipino sufferers is that, there is no government support for the expensive treatment. Ordinarily, every infusion/transfusion of factor concentrates range between P15,000 to P30,000, depending on the weight of the sufferer. Some patients would need to be infused every 12 hours. If you do the math, the treatment for hemophilia is just way too prohibitive for ordinary wage earners. One infusion is even more than the monthly income of a minimum wage earner.

Rome was hardly speaking when Mayet Charvet (Haplos board member) and I visited him this morning. We couldn’t even get near to him because he was fuzzy from the pain on his knee. Unfortunately, like most hemophiliacs in the country, Rome’s parents were hard put to buy factor concentrates which would instantaneously stop the bleeding.

When I got a text message from Rome’s mother, Angela, I immediately contacted Fr. Don Kill, a Columban priest who has been helping hemophiliacs in the Philippines. Fr. Don, fondly called “lolo” by hemophiliacs, is also the country coordinator of US-based humanitarian organization Project Share. Thankfully, there were still some factors from Project Share which founder Laurie Kelley brought during her recent visit. Project Share is such a blessing to Filipino bleeders, most of whom could hardly afford to bring their children to the hospital much more buy the very expensive factors.

While his mother went to get the Factor 9 donation from another hemophiliac parent, Rome’s lolo (grandpa) could do nothing but caress the little boy’s hurting knee until he fell asleep. Tears had dried up from his eyes by the time we left him sound asleep, hugging his tiny bear.

My heart aches for little children like Rome, whose childhood are snatched away from them because of hemophilia. They could not play rough games like most boys their age. No soccer games for them, not even basketball. Because the slightest injury could mean lifelong physical deformity, unless they get factor infusions to stop their bleeds.

Please pray for Rome, that he will be well enough by his birthday. And please pray for all bleeders. That one day, in our lifetime, boys can be boys. And bleeding girls like Star will no longer be afraid to have children of their own.

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.