As part of this celebration, through the courtesy of the National Historical Commission of the Philippines – Museo ni Manuel Quezon, the Quezon Memorial Shrine pylon was lit in red for three days from April 15 to April 17, 2019 starting at 6:00 p.m.
“Light It Up Red” is a world campaign to create visibility for people living with hemophilia and other inherited bleeding disorders. To those with bleeding disorder, so that they know their peers are there for them; to those who do not have a diagnosed inherited bleeding disorder, it is an invitation to find out more about the bleeding disorder or live with one who does not have access to care.
The HAPLOS Community, which stands for the Hemophilia Association of the Philippines for Love and Service, holds the color RED close to its heart. RED is often associated with blood and hemophilia organizations, but most importantly to HAPLOS, it means love. Indeed it must be love that drives care and service for those who suffer with hemophilia.
Only 1,500 patients out of an estimated 10,000 have been diagnosed. Many suffer debilitating and potentially life – threatening complications due to a lack of access to treatment. As hemophilia is lifelong, the burden on patients and their families is often too hard to bear on their own, Monthly treatment costs per patient can often double minimum wage, and government support is still very limited in providing medicine and treatment centers which are trained to deal with the rare disease. Community support for patients and their families has been instrumental in keeping hope alive, while advocacies seek a sustainable future of treatment for all.
In conjunction with this lighting of the pylon, and the start of Holy Week, HAPLOS COMMUNITY, partnered with the church group FAMILIA (Family Life Apostolate) – East Community to hold a prayer for the sick through a Celebration of the Holy Mass on April 15. This was held at the Museo ni Manuel Quezon Grounds in front of the shrine. Members of Familia Community East A and East B gathered together in solidarity offer prayers for the members of HAPLOS Community.
The ABS-CBN Salamat Dok crew was on hand to interview Dr, Flerida G. Hernandez, HAPLOS Treasurer and Ms, Maria Lourdes D. Formalejo, HAPLOS President, along with a patient with hemophilia.
About 200 people in the immediate vicinity of the Museo ni Manual Quezon Grounds participated in the program, in the Mass and prayer for the Sick. Lourdes Bautista, a mother of person with hemophilia and who belongs to a family with hemophilia gave a personal sharing of her experiences, difficulties, challenges, hopeful attitude over the conditions of hemophilia. She is strengthened by support of community and faith in God that allow her to cope with these circumstances. Countless people who were in the Quezon Memorial Park were witnesses to the Lighting of the Shrine with Red.
In other parts of Metro Manila, HEMOPHILIA PHILIPPINES (HAPLOS Community) was also able to have other significant and historical places to “Light it up with Red” from April 15 to April 17, 2019 in connection with celebrating World Hemophilia Day.
The University of Santo Tomas (UST), the four-century old Pontifical, Royal, and Catholic University of the Philippines is also joining the world in celebration of World Hemophilia Day 2019. Founded in 1611 by the Archbishop of Manila, UST has the oldest extant university charter in the Philippines and in Asia, and also houses one of the city’s major teaching hospitals. The UST Hospital has been one of the primary treatment centers for hemophilia in the past two decades. The Main Building of the UST joined the “Light it up Red” celebration of World Hemophilia Day.
In addition, the government of the City of Makati has also approved the lighting of the Makati City Hall and joins in the celebration of World Hemophilia Day on April 17.
For more information, you may contact Hemophilia Philippines (HAPLOS Community) Foundation at 239-8518, or 09178427567.
