“One Beat for Paolo”: A Fundraising for a Cause
They say that love is not just an emotion nor that giddy feeling when you see someone; nor all raibows and roses; but more than that, love is a decision. When you love, you decide that you will love someone no matter what his or her condition is - rich or poor, sick or healthy... Everyday, you make a decision to love.
I am Roselle D. de Leon. I have been Paolo's girlfriend for more than 8 years. When I first saw him, he was playing drums in one of the retreats we were organizing in 2007. I did not know his name then, all I knew was that, he got the beat. You know when you just move your head because the music moves you? That was how I felt then.
Fast forward, after 8 months of courtship and discernment, we became a couple. We started off well, just like any couples, we had our fights. For me, it was a period of adjustment because I was an NBSB. So we continued with our journey, there were times when he would tell me he was having a hard time walking. Then when he practiced drumming, he noticed that his beat and timing were becoming a little off.
Years passed and he noticed that his hands and feet could no longer coordinate. He recalls: “As if my foot had a mind of its own”. It was later on accompanied by slowness of his movement and slurred speech. We have consulted several specialists until he was diagnosed in 2015 of x-linked Dystonia Parkinsonism or commonly known as “Lubag”. This is a rare disease which affects men who have a maternal ancestry in the Panay group of islands in the Visayas . The disease is progressive and degenerative*. This explained the changes he was feeling especially in his movements. He was devastated when he learned about this diagnosis and reflected. It was not easy accepting the fact that there are things which you can no longer do when this disease progresses overtime.
After coming to terms with his medical condition, he accepted his fate even if it’s not easy. He said, “Hindi pa naman ako mamamatay. I am sure that God has plans kaya Niya ibinigay ito sa akin.” We continue with his treatmenta and consultation. When people our age our hopping from one bridal fare to another, we were hopping from one hospital tp another for tests, check-ups and lab tests.
News came several months ago when his neurologist told him that there is a way to delay the progression of the disease and to manage the symptoms through a procedure called Deep Brain Stimulation (DBS). DBS is a surgical procedure used to treat a variety of disabling neurological symptoms—most commonly the debilitating symptoms of Parkinson’s disease (PD), such as tremor, rigidity, stiffness, slowed movement, and walking problems.**
The procedure is readily available here in the Philippines, however, the cost would be around PhP 2,000,000.00.
We are knocking and hoping for your generosity in helping Pao get his beat back. He drummed his way into the hearts of his family and friends and we are passing the beat to you hoping that you could support him in his journey. For other means, you may send it directly to Pao.
BDO Savings Acct: 001120529873
Name: Paolo Antonio E. Isberto
Thank you and God bless you!