MANILA — A Filipino-Canadian has raised almost P58,000 to help hemophilia patients in the country severely affected by the pandemic and typhoons as aid to their families while the holiday season nears.
Pathemae Dael, who is currently based in British Columbia in Canada, decided to create a GoFundMe campaign when she saw her fellow Filipinos’ social media posts regarding the onslaught of typhoons Rolly and Ulysses.
The 23-year-old, with the help of her friends, raised CAD 1,530 or P57,736 on the crowdfunding platform and donated it to the Hemophilia Advocates Philippines (HAP), a patient organization composed of people with bleeding disorders or hemophilia.
Hemophilia is a rare, and inherited blood disorder where the patient's blood lacks the ability to clot normally. These disorders could lead to severe and spontaneous bleeding.
“I was just scrolling through social media and saw a lot of posts in regards to the typhoon and I found myself just doing that for days. A big part of me felt wrong about being aware of the situation and not being able to do anything about it,” she said in an interview with ABS-CBN News.
Dael expressed gratitude to those who donated, and wished that she could personally hand it to the recipients, who she said had gone through difficult situations.
“I want to acknowledge how strong they already are for going through all of these and have complete faith that they’ll pull through. You guys deserve all the good and I religiously believe deep in my bones that it is coming your way,” she added.
Andrea Trinidad, the group’s founder, said the money would be used to provide relief packages to at least 9 hemophilia patients severely affected by the pandemic and the strong storms.
The advocate, who also has hemophilia, said the relief packages would be distributed before Christmas.
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One of the recipients of the food packs is Jessie David, from Mabalacat in Pampanga, who has been suffering from a severe case of hemophilia.
In an interview with ABS-CBN News, the 59 year-old said it was doubly difficult for him to find a job because of his condition, and the pandemic.
David has a computer shop — a “pisonet” — but was forced to close during the lockdown. It was only during this month when it was finally opened again. He said he earns at least a hundred pesos from this.
His family is barely scraping by a daily budget of P300, earned from his sideline as an informal rider and his indoor table billiard business.
“Ngayong December pa lang ako nakapagbukas ng Pisonet ko, tapos ngayon sobrang hina pa ng mga nagko-computer, yung iba lumilipat sa computer shops kasi updated, yung sa akin hindi naman,” David said.
(It is just now, December, when I was able to open again our Pisonet but we do not have a lot of customers. Some already went to computer shops that have updated computers, mine runs on an older version.)
During the onslaught of Ulysses, a part of their roof was blown away by strong winds. He said his family has been trying to fund the repair.
“Mahirap [ang hemophilia] sa akin dahil sa edad kong ito, sobrang hirap na. Mayroong kikitain kaso hindi kaya ng katawan ko na... gusto ng isip ko pero hindi na kaya ng katawan ko. Sobrang hirap. Basta yung sa edad ko itong, talagang hirap na hirap na ako, minsan uupo ka lang, kahit wala kang ginagawa namamanhid na yung paa mo,” he explained.
(Having hemophilia is difficult because of my age. I cannot earn because of my physical condition, too. It is really hard because even if I am sitting, my feet get numb.)
Trinidad said the pandemic and the storms were “double whammy” to some hemophilia patients.
“We're cracking our heads paano namin matutulungan yung mga displaced because of the pandemic… Nananawagan nga kami kasi gusto namin na madagdagan pa yun para makapagbigay kami sa mga pasyente ng gift packs for Christmas,” she said.
(We're cracking our heads how to help those displaced... We are still asking for donations because we want to also give gift packs to some of our patients this Christmas.)
One in every 10,000 live births in the country is bound to get Hemophilia type A, while 1 per 30,000 live births can get Hemophilia type B said Dr. Marilou Abiera, the president of the Philippine Society of Hematology and Blood Transfusion.
Hemophilia A patients are deficient of clotting factor 8, whereas Hemophilia B patients are deficient of clotting factor 9.
There are less than 2,000 Filipinos, meanwhile, who have been diagnosed with hemophilia, but Trinidad said this figure could be higher given the number of those yet to be diagnosed.
There is still a long road for the country to help hemophilia and bleeding disorder patients, Abiera said.
But advocates have said that the first step to help these patients would be the creation of a national facility to accommodate all of bleeding disorder patients through the Bleeding Disorders Standard of Care Law, which is still pending in Congress.
Those interested about the Hemophilia Advocates Philippines may click this link.
If you want to be a part of the group, donate, or if you want to know more about the condition -- you may go to their website by clicking this link.