My name is Joanne Gendrano. I currently work as a chef in Dubai. I am posting this story to ask for your generosity and kindness to help this family who are very much in need. This came to my attention last Thursday (June 18), 2020) morning when I saw a post from my college friend, Jirome Castro.
Jirome, has been diagnosed with dystonia (movement disorder in which a person's muscles contract uncontrollably) a few years ago and has made his mission in life to raise awareness of this disease. Despite his condition, Jirome runs triathlons in the Philippines to raise awareness of this disease and money for patients. Through his advocacy, he met people who are afflicted with the same disorder but was particularly touched by the story of Rolie Oliva, due to the severity of his symptoms and resilience of his family.
Rolie used to work as tricycle driver for years. In 2014, he started to experience mouth or “oromandibular” dystonia which affected his speech (making him “ngongo” from then on). It then moved to his leg. In 2016, he was finally diagnosed to have XDP or x-linked dystonia parkinsonism which is a rare kind of dystonia. The disorder is also called “lubag” in the Ilonggo dialect, referring to involuntary muscle twisting & spasms. It is a painful, progressive, neurodegenerative disorder. What is mind boggling is that this condition only seem to affect Filipino men with roots from the Panay Region. See his medical abstract in the attached picture.
Unfortunately, Rolie is suffering from the worst of symptoms as you can see in the video. While Jirome’s symptoms involves his neck area, Rolie suffers from uncontrollable movement throughout his entire body making the pain unbearable and exhausting. You may read about XDP more in this link:
Rolie is a father of 4 kids and married to Cessy Corpuz. Cessy currently works in a nail spa earning Php 250 a day. With the lockdown happening, they are in a terrible situation struggling to make ends meet and being able to afford and even get Rolie’s medication to calm him down & botox injections to help control his movements.
Rolie is currently bedridden. Cessy needs to feed him, give him a bath & brush his teeth. The family sometimes need to turn him to lie stomach down and tie his mouth to somehow control his movements and not bite his tongue. Feeding is the biggest challenge to Cessy. Not only does she need to make food small enough for him not to choke on and digest it smoothly. Having financial challenges also means its tough for the family to afford highly nutritious supplements like ENSURE milk powder to maintain his strength. He is running the risk of malnutrition, thus lowering his immune system which can further worsen his situation.
They need your help.
What they need help with right now are the following:
1. Help with his daily medicines. Cessy told me that they spend more than Php300 or USD 6.00 per day for his meds alone plus he needs vitamins and botox injections to control his nerves. Botox injections needs to be done every 3 months and it costs Php 25k or USD 500. A good doctor was able to help him out with this last year, but he desperately needs another one asap.
Cessy used to line up the whole day at PCSO to get support for the botox injections. Last year, PCSO has stopped funding this treatment leaving many patients in need without any support and pain relief until they can afford to get one.
2. The ultimate goal is for Rolie to have a surgery for deep brain stimulation that can help him be rid of some of the crippling symptoms and return to normal life and get back to work. This would cost roughly Php 2 million or USD 40k The surgery has been proven to help other patients with their symptoms dramatically enabling to manage symptoms better and get back to work.
- A huge sum to reach, which is why we need your help to build a network for Rolie and Cessy. Please share his story and ask your friends to re-share. Hopefully, his story reaches more people or a philanthropic charity network that can help him afford the surgery.
I know these are tough times, any help you can give them would be hugely appreciated. If you cannot donate, please share their story as much as you can on your pages. Tag his wife, Cessy Corpuz and Rolie Oliva. You can DM Cessy on messenger. Here is the link to her FBaccount: https://www.facebook.com/cessy.corpuz?eid=ARDViAaKYydVbRhzY6eUQQQfAbnu3DM4RQQU489hN4RU2C6i62csAf2CfCuiYXPcJLPwqAF_8yEhAKfz
For donations, here are her details:
Cessy M Corpuz: Land Bank #1306085596 GCash # 09300553303
For those who have BPI, you can now do interbank transfer on the app itself.We will be setting up a a paypal account linked to go get funding for those who would want to help them from abroad.