On Valentine Day 2015, a small child in a blue Princess gown named Pauline, age 10, fulfilled a dream by singing on stage at a concert in the Makati District of Manila, Philippines benefitting seriously ill children such as herself. She was joined on stage by five other small friends with whom she shares treatment via the Rare and Orphan Disease Division of the National Institute of Health at Philippines General Hospital. The concert, starring the singing group the Angelos, benefitted the Philippine Society for Orphan Disorders. The children's proud families attended as guests of Asia America Initiative who support and assist their care by NIH by facilitating the specialized medicines from the United States to Manila. Thanks to Global Giving donors, AAI made a $500 donation to PSOD to cover the cost of supplemental medicines and nutritional support for these very special children.
Pauline suffers from a very rare disorder named Gaucher Disease. Gaucher disease is caused by a deficiency of the enzyme glucocerebrosidase. It affects the spleen, liver, lungs, bone marrow, and brain. There is only one life-saving treatment: enzyme replacement therapy. Imiglucerase (cerezyme)- Genzyme is available for most people with types 1 and 3 Gaucher disease. Given intravenously every two weeks, this therapy decreases liver and spleen size, reduces skeletal anomalies, and reverses other symptoms of the disorder, including abnormal blood counts.
Dr. Maryanne Chiong, lead physician at the Institute of Human Genetics at the National Institutes of Health says, "These children are from very indigent families from Manila and some from provinces. Their families could never afford the cost of these very specialized medicines. But without the monthly intravenous cerezyme medicines they will die from internal bleeding or from neurologic complications -- if their brain is affected."
Asia America Initiative's assistance to these children via Dr. Chiong and her staff compliments the wonderful hospitality and support and supplemental funding for travel and lodging that comes from the privately-funded PSOD to children such as Pauline and their families. Until a more permanent cure is found, the children will need their monthly injections for their entire lives.
When AAI staff first met Pauline in 2011, she was a frightened five year old wearing a surgical mask in a hospital bed. She was in continuous pain and had refused to go to kindergarten because of teasing by other children about her appearance--her swollen abdomen caused by the disease. She faced imminent tragedy due to the pressure on her liver. She could hardly walk, much less dance.
The past four years of medical care has made a tremendous difference. At the Valentine benefit concert, Pauline who loves to sing and dance and always has a big smile, wore a blue princess dress and tiara with a microphone in her hand. It was a dream come true to be on stage in a spotlight with her friends to sing along with the Angelos "boy band."
In a previous visit to NIH facilities at Philippine General Hospital, her grateful Mom said with tears in her eyes, "May God bless all of our friends from far away places who have never met us, but have cared for Pauline as if she was one of their own family members. Words cannot describe the gratitude that we feel. Maraming salamat.[Thank you very much.]"
In 2014, Asia America Initiative achieved a heartfelt goal when 49 of thefirst 50 cancer patients in Manila, Philippines -- whose treatment was aided by contributions from the Global Giving community -- were diagnosed as cancer free. In addition, seven children with terminal hereditary genetic illnesses are living healthy normal lives thanks to the generous donation of specialized medicines by a major US-based pharmaceutical company. We ceclebrate and embrace each life saved. However, the rate of serious diseases such as cancer is growing worldwide. Cancer treatment organizations and service providers are concerned that the availability to obtain cancer medicines, especially by people living below the poverty line, remains a serious challenge, As a result, we have decided to expand the program, not only in Manila, but in the most impoverished region of Mindanao where such treatment is extremely difficult to receive.
In addition to maintaining our relationship with the medical professionals at the Philippines National Institutes of Health in Manila, we are forging an alliance with the Kids of Hope charitable organization and the Children's Cancer and Blood Disease Unit of the Southern Philippines Medical Center in Davao. We have begun assistance for supplemental health and nutrition needs of children undergoing specialized treatment at CCBDU and staying at the neighboring Hope Center in Davao for children whose families earn less than $5 per day. The program includes art supplies, story books and toys to instill positive attitudes, love and the will power to live. We also support literacy and livelihood training to empower the Moms and Grandmoms to overcome poverty and inspire their communities.
Quality medical care does not exist in most of Mindanao, and travel to specialized clinics is too expensive for most families. In addition, severe poverty and malnutrition afflict more than 60% of the population. Healing from cancer involves more than medicine; it requires a more positive and joyful attitude which is difficult to develop in impoverished communities. Dr. Yolanda Ortega Stern, Director of the One World Institute, says: "The international support from Asia America Initiative to the community based coalition of Kids of Hope and the Southern Provincial Medical Center, could ultimately save hundreds of young lives and act as a model for global partnertship in the effort to heal cancer patients. The children live in remote impoverished areaas, but the love they receive from people from all over the world is their best medicine."
This Cancer Treatment program is an international model of donor kindness and corporate social responsibility. By surviving, and experiencing hope, the multi-ethnic children and women inspire their neighbors in large ghetto communities. Adult literacy and education will enable surviving women to provide better lives for their families. For children living in dire poverty the influence of violent crime and militant extremism is a constant temptation. This holistic program in multi-ethnic and diverse religious communities such as in the Mindanao region is also a model for peaceful co-existence. We are exremely grateful to all who have supported us in the past. We ask you to please remember us and feel welcome to be part of our growing team.
In October, 2014, at Philippine General Hospital in Manila, doctors and nurses from the National Institutes of Health [NIH] under the authority of the Philippine Department of Health began Stage 2 of Asia America Initiative’s Art of Hope and Program for Women and Children afflicted by cancer and rare genetic diseases such as Gaucher Disease and Pompe Disease. Without proper treatment, women with breast and other cancers have no chance of survival and the rare genetic diseases usually cause the death of children by the age of 7.
With your help, we have been able to help answer the prayers of the patients and their families – almost all of whom are under the poverty line and unable to afford the cost of such treatment -- by providing “gifts of life” without charging them fees beyond normal outpatient costs. This is made possible by an incredibly generous pharmaceutical company who specializes in rare diseases and anti-cancer organizations in the United States and Germany. Donations from Global Giving donors permit us to purchase light medicines to neutralize side effects caused by the powerful medicines.
In Spring 2009, AAI President Albert Santoli started Stage One of this program, and by late summer it was supported by Global Giving. All 20 children in Stage One are now cancer-free. Out of 30 women with breast cancer, according to the Philippine Cancer Society, 27 are now in remission. And after 5 years, 7 out of 8 children with rare and deadly genetic diseases which affects their liver and kidney functions, are otherwise healthy and strong. In September and October, 2014 genetics medicines needed to cover the next 6 months of steady treatment for all of these children was coordinated and shipped to the Philippines by AAI, in partnership with the Philippines Secretary of Health Enrique Ona, MD, the NIH and our pharmaceutical donors.
The past two years medicines for children's cancers such as Lymphoma and Leukemia have been extremely difficult to acquire. Donations of adult-related cancers have also been difficult to obtain. However, in late September 2014, AAI shipped 50,000 tablets of an anti-breast cancer medicine called Letrizole for use in the Breast Cancer center at Philippines General Hospital, the main Department of Health public hospital in the Philippines. Philippine General Hospital cancers to hundreds of women per year who suffer from breast cancer. These medicines will be used for patients at or below the poverty line with no cost to them or their families. Funds from Global Giving donors will also be used for light anti-side effect and nausea medicines and much needed vitamins and other nutritional support of patients.
Dr. Maryanne Chiong, MD, a Clinical Geneticist and lead doctor of such diseases at the National Institutes of Health in Manila has expressed her profound gratitude to AAI and our donors, including those from Global Giving. “We have never imagined such generosity, especially from new friends to our country from across the world, who have made it possible for us to keep these women and children alive. Without regularly scheduled doses of these very rare medicines, the children could not survive. We wish many blessings for all who have contributed. They should know that they have a profound place in all of our hearts.”
In 2013-14, Asia America Initiative successfully completed treatment of our first 20 child cancer patients in the Philippines with a 100% success rate for healing. In addition we have kept alive 8 out of 9 children born with rare genetic diseases. We thank God for watching over the children, doctors, nurses and medical suppliers who all conbtributed to the program's success. Our ability to provide the supplemental care, nutrition, transportation and artistic supplies came from our many heartfelt donors and partners in the Global Giving community.
Dr. Maryanne Chiong who is the head of Orphan Disease Research and Treatment at the National Institutes of Health in Manila, says, " The Asia America Initiave partnership with our hospitals and medical specialists has made the difference between life and death for 20 precious children. The cancer patients and eight other children born with rare genetic diseases that require ongoing and unique care have been provided the gift of life. We are so grateful to all donors living overseas -- from pharmaceutical companies to private citizens and students -- who sacrificed even a day or week's worth of coffee and donuts to send a modest but meaningful contribution have added up to a giant act of good will. Their action assured our children's survival."
At present AAI is seeking the financial support to purchase medicine so we can choose 20 new children from impoverished communities whose families would not be able to pay for the cost of their treatment. Oncology [cancer] medicines that overcome varieties of cancer that most affect children -- such as lymphoma and leukemia -- are in short supply in the United Stats and internationally.
We extend our heartfelt gratitude. We seek your support in this ongoing mission to assist these wonderful doctors like Dr. Maryanne who otherwise would lack the resources to save more children's lives.
Wonderful news for our Global Giving Donors: In August 2011 Asia America Initiative, with no funds for new programs and the organization's President recovering from a cancer surgery that few doctors thought he would survive, adopted 20 women and 30 women with various cancers in the Philippines and brought them to the mercy of the world through Global Giving. These human beings came from among the poorest people in the world whose families earned less than $5 per day.
Less than 3 years later, the program's first 20 children are cancer free -- thanks to your loyalty and generosity and incredible medical professionals at the Philippines Department of Health, the Philippine National Institutes of Health, the Philippine Cancer Society, Consul Helen Ong, our advisor Dr. Jaime Galvez-Tan, M.D. and staff at various hospitals in Manila. Our volunteer artists, psychologists and mascots have also had a major role. And of course, the Power of prayer. In addition, 27 out of 30 women who entered into breast cancer treatment under the program are now cancer free, with the other three still receiving treatment. And 7 out of 8 Children with rare genetic diseases are still alive and healthy. These children require monthly injections of Genzyme medicines which the company generously donates even though each treatment costs more than $10,000.
We have had the support of Thomas Roane at the National Cancer Coalition in Florida and our wonderful European friends at HFK-KrebsAllianz, and the unbelievable scientists at Genzyme, Inc. who invent and produce replacement medicines for terminal diseases that usually take the lives of beautiful children before they reach 13 years old. We still needed to raise thousands of dollars to cover an assortment of expenses relted to treatment, nutrition and maintaining a positive attitude through artistic expression.
In April 2014, AAI is using funds provided by Global Giving donors to provide for follow-up testing for recovering patients and to assist 60 children and their families to attend the Philippine Cancer Society's Children With Cancer Awareness Month activities at various public hospitals.
From the bottom of our hearts, we speak on behalf on the beneficiary women and children who are live today thanks to you. Maraming salamat, Po in Filipino language translates: Thank you very much, dear friends.
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