During the last Quarter of 2013, the Philippines was overwhelmed with natural disasters including a major earthquake, outbreaks of dengue fever, leptospirosis plague in post-flood sewage, a lethal strain of measles and the most powerful typhoons in recent history, as well as armed conflict and ethnic cleansing in Zamboanga city. Due to the dramatic number of historic crises, it is extremely difficult to raise funds for chronic illness programs such as cancer and genetic disorders. We receive no government grants or funds or communication from the US embassy. In fact, AAI received less than $850 for the Art of Hope and Healing Program supported by Global Giving donors during September through November. Although AAI worked to save lives in conducting emergency relief, we did not abandone our women and children patients Leveragingwith lethal chronic illnesses. Thanks to our wonderful partners at KrebsAllianz in Germany, the National Cancer Coalition in Florida, and the Department of Health and National Insitutes of Health and the Philippine Cancer Society in Manila, medicines and medical treatment are available. With funds from compassionate Global Giving donors, during September to November 2013 we we were able to transform $850 in cash into more than $169,500 in rare donated medicines such as Cerezyme and Myozyme to keep alive children with gentic diseases such as Pompe and Gaucher and provide backup for the medical exams of women with breast cancer.
We work with the Institute of Human Genetics (IHG) which is one of the service and research oriented institutes of the National Institutes of Health-University of the Philippines Manila (NIH-UP) that specializes in "orphan diseases." Currently, at least six bright and beautiful children who come from families under the poverty line who require monthly injections of these gene replacement medicines to survive are alive thanks to you!! Dr. Mary Anne Chiong, MD, a specialist at the Insitute of Human Genetics says, "The medicines provided by the Asia America Inititaive have made the difference in the surivial of our children with Gaucher and Pompe diseases who would not live beyond the age of 12."
Our donors are persons with modest incomes or resources, yet you have done your part to prove there is kindness in this difficult world. I cannot put into adequate words the gratitude the medical staff, the patients and their families all feel toward you for your simple but profound acts of caring. God bless all who have assisted.
The following is an e-postcard from Zamil Akhtar, a GlobalGiving Representative in the Philippines:
Pauline is the sweetest little girl you will ever meet. She’s always smiling, slightly shy, and abundantly playful. But if not for Asia America Initiative’s cancer treatment program, she may not be alive. To treat the disease she suffers from requires a new medicine that costs thousands of dollars a week – her parents make about $200 a month. With help from a pharmaceutical company, Asia America Initiative has arranged to have her treated, and also provides art classes for her and other children in the program.
The production of many cancer medicines, especially those which can most readily save the lives of children, are in short supply worldwide these days. Thanks to GlobalGiving donors, your modest heartfelt donations to Asia America Initiative [AAI] and with our partners in the pharmaceutical industry, we have made a major contribution to saving the lives of over 100 cancer and rare disease patients in the Philippines and joy to their grateful families. Today more thqan 100 new and ongoing patients are receiving treatment under the program. We started our partnership with GlobalGiving in 2011with a finite but challenging goal of saving 20 children and 30 women. However, as a result of AAI's Art of Hope and Healing program, backed by the National Cancer Coalition, KrebsAllianz and other American and European humanitarian medical organizations and medical companies, our Philippine Cancer Society partner in Manila has created a nationwide Cancer Patient Navigation program that is bringing healing care to hundreds of men, women and children stricken with all forms of the life threatening disease. In April and May 2013 AAI is contributing Temodar chemotherapy medicine for at least 12 children with brain cancer, Bicalutamide medicine for 100 men suffering from prostate cancer, funding for at least 6 women overcoming breast cancer to receive mandatory medical check-ups and support for their immune systems, and Cerezyme medicine to keep alive at least four children suffering from Gaucher disease, a rare, and eventually fatal inherited genetic disorder that causes enlarged livers and spleens, anemia and bone deterioration. Cerezyme is administered intravenously, is the only way by which medical doctors can save their lives. However, the regimen required would cost more than $200,000 per year, which is unthinkable for most families in the United States and around the world. In the Philippines, patients in the programs have family incomes of less than $100 dollars per month.
AAI President and Arts of Hope and Healing Coordinator, Albert Santoli, is a liver cancer survivor that resulted from complications in the battlefield intravenous blood transfusion he received as a young soldier. His commitment to never give up on life or the Art of Hope and Healing Program, despite shortages of medicines and cash resources, has a soldier's dedication to saving the lives of those in the greatest need. Even when medicines are hard to find, there still is so very much to be done in providing blood chemistry tests, nutritional support and assisting the coordination of transporting and distributing these increasingly rare life saving medicines. Mr. Santoli's counterpart at Philippine Cancer Society, Mr. Romy Mercaido is Patient Navigation Coordinator at the Philippine Cancer Society. His message to our wonderful friends and donors at Global Giving is, "We could not do this with out you. Maraming Salamat, Po. [Filipino language meaning, "Thank you so very much to everyone.]"
Together the kind-hearted pharmaceutical companies' executives, Asia America Initiative, National Cancer Coalition, KrebsAllianz, Philippine Cancer Society and our oncology doctors and nurses who provide the specialized care have their commitment fortified by treatment are continuing to build the capacity to expand our healing outreach. Thanks to all of you!
The Art of Hope and Healing program for cancer victims was created in 2008 by Asia America Initiative and the US-based National Cancer Coalition in Manila, Philippines. In partnership with public hospitals, our goal is to extend our peace building in communities plagued by insufferable poverty and armed conflict between people of various religions and cultural groups. We act as models of unity and compassion by our inter-faith teams serving the poorest of the poor. We began the Art of Hope program with a target of 30 women with breast cancer and 20 children with various cancers including leukemia and lymphoma. But since becoming involved with Global Giving our services have grown -- thanks in large part to Global Giving donors -- to serve over 100 additional children with blood disorders, such as hemophilia and rare genetic illnesses such as Pompe Disease. Cancer treatment medicines from pharmaceutical companies have been more and more difficult for all NGO's to obtain and highly expensive to procure. However, we have found other important ways to help heal our beneficiary women and children. Our message is: EVERY HUMAN LIFE MATTERS. More than 100 women and children have received the gift of life.
11 year old Paul* [first name only to protect privacy of a minor] suffers from the bleeding illness hemophilia. He cannot walk but he is an honor student and a local champion of the game of chess. His family of six live in a one room shack in an overcrowded neighborhood in Rosario, Cavite just outside of Manila, the swarming capitol of the Philippines. Everyday his father, a humble construction laborer, must bicycle and carry Paul one kilometer to and from school. For the family, their greatest wish was a wheel chair for Paul. That would be a small miracle, far beyond their family budget.
Just before Christmas 2012 their wish came true when AAI nurse Mariole Sumile and program assistant brought Paul a handcrafted all-terrain wheel chair provided by the One World Institute of California. It was a total surprise for his family and all of their neighbors.
The joy that Paul and his family felt upon receiving the wheel chair was beyond words. With the help of the wheel chair, Paul can now do small things like visit friends and travel to school each day without asking assistance. Paul is now one step closer in achieving his dreams of eventually becoming a graphic artist.
With tears in his eyes, Paul sent a message on video to children around the world who also face physical challenges due to illness: "You should not lose hope because of illness, because for me hemophilia is not a hindrance. Instead it’s just a challenge to be stronger in my life. We should not let other kids tease people like us because we are also normal. We might have differences in our physical appearance, but we are also the same as people everywhere." [See the "Art of Hope and Healing" video attached to this written report].
The gift of healing from chronic and severe illness, especially for children, begins with hope. December 12, 2012 will always be remembered as a special day by the Bobadilia family. They live in a one room shack, in a rural slum in Rosario Tejeros Cavite, south of Manila. The oldest son, Paul is 14, suffers from hemophilia and can bleed to death from simple cuts and bruises. Although they live in Southeast Asia, they could be from any country in the world where millions of people live in extreme poverty. The mother, father and Paul’s two younger brothers and toddler sister live in a one room hovel, with holes in the tin roof and abandoned plywood walls… they have no television or computer. Just a wooden chair and wooden bed where the family sleeps together.
Paul is a very bright boy who loves to play the guitar and is extremely bright -- an award winning chess champion. But he cannot walk due to the damage caused by excessive bleeds throughout his life. He would like to pursue his abilities but is horribly bullied at school and called “a leper.” Regardless, he seldom misses a day of school, a one hour walk from their shack along rugged muddy paths. His father, a short but strong day laborer, carries Paul on his back everywhere. He carries him to school, back from school, to the hospital and back when he has bleeds or AAI provides Refacto coagulant medicines, outside to sit in fresh air and back into the shack... never complaining.
AAI staff first met the family on a home visit in November 2012 as part of our “Art of Hope and Healing” for cancer and rare diseases program supported by Global Giving. The family stated they would desperately like to get Paul a wheelchair. This would enable his mother to take him around and allow his father the opportunity to make some money in construction. His father is having more and more trouble carrying him as Paul grows up and is afraid the time will come when he will be unable to do so. They said, it would be a tragedy if Paul could no longer attend school and ends up confined to this tiny shanty for the rest of life. Because even though AAI is assisting with medicines to coagulate his blood, we don’t have the money to purchase wheelchairs and neither does the family.
On returning to Manila, AAI staff nurse Mariole Sumile reported the story of Paul to Executive Director Albert Santoli in Fairfax, Virginia. While AAI’s pharmaceutical partners donate astronomically expensive medicines for women and children with cancer and other life-threatening diseases, Global Giving donors are providing funds to assist us in critical supplementary needs such as nutrition, transportation to and from hospitals, blood chemistry tests, psychological and morale building through art activities, and other patient needs. In Paul’s circumstance, the One World Institute in California donated an all-terrain wheelchair made of unbreakable materials and with flexible wheels.
On December 12, just two weeks after meeting the family, AAI staff returned with a surprise gift. On arrival in the crowded Rosario Tejeros community, Paul’s father Teresito was teary eyed when asked what they need. He said, “A wheel chair. Every time we go to hospital, the clinic is a flight of stairs and the hospital doesn't let them borrow a wheel chair because too many patients are in need. And I must carry Paul on my back.”
The attached photos show the family’s surprise and joy on receiving the wheel chair. Paul and his parents, as well as the entire Asia America Initiative community express gratitude to our Global Giving donors who have helped make this act of compassion possible. Healing does begin with Hope!
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