LEANING FROM FAILURE: ADAPTING TO OPPOTUNITY. One of the most fulfilling results of the Asia America Initiave Program to support children with cancer and life threatening diseases in the Philippines is how we have become more effective with modest funds and now support four times the original number of childen. The roots of our success were motivated by the fear of impending failure. Since 2011, with the help of Global Giving donors we have aided the recovery of 49 out of 50 women and children who struggled in dire poverty to be healed from cancer by helping to provide medicines and art supplies to instill a positive attitude foir recovery.
The program:suddenly changed in 2013 when all charitable organizations dedicated to fighting lymphoma and leukenmia could not find donations of medicines. We were still assisting ten childen who were born with terminal rare genetic illnesses. if they do not receive monthly genetic replacement medical injections they will perish. And due to local bureaucratic and corruption issues the genetic medicines were becoming harder to get past the Customs "brokers." and kickbacks can be a major obstacle. We were crushed with the fear of impending failure which could lead to the death of some wonderful and hopeful kids.
For the sake of these children, my staff and I were determined not to fail.. even if we didn't know what we could do. Giving up was not an option. In my own experience as a cancer and life-threatening immune disease survivor I had endured emergency surgery, a stroke and a broken artery, . I was not expected by some doctors to live past 2009. But the angels of health had other ideas, in part because I loved these cancer and rare diseases stricken kids who depended on my survival. I also had the benefit of understanding that in order to recover, a patient needs strong faith and effective chemo-therapy along with proper nutrition and a positive attitude. Feeling love from family and friends is also essential. So we created a new plan of action and tried to find where WE were failing. We had to calmly evaluate and take advantage of what would be possible to save these childen. Being angry or feeling sorry for ourselves was not allowed. Instead, we created an action plan:
Partners: We were inspired by being accepted into the Global Giving community. Some longstanding donors had left us because they thought I was "dead man walking," Global Giving showed me that good hearted ordinary people would support us with modest donations to compensate for the loss of larger grants. Yes, it was more work to prepare donor campaigns, but the resulting generosity was worth the effort. And we always ask our program partners for their inputs and lessons learned.
Alernative Health Resources: We placed a heavier emphasis on vitamin supplements and nutritional support that would counter the effects of chemotherapy and strengthen young bodies' reistance to fight back against disease. In addition, we used Global Gioving donations to buy emergency medicines and pay for blood tests. And we reached out to willing partners to supplement medicines that we could not find. Humility and Egolessness is key -- share the credit and publicity.
Don't Be Shy to Reach Out: To overcome issues of corruption and bureaucratic obstinacy, we reached out to influential private and government sector officials to help us cut through "red tape." To recover from terminal illness requires low stress, thus I learned the "humanitarian ninja" techiniques of how to fight without anger and transform heavy emotion into positive energetic efforts in defense of our beneficiaries. This positive attitude attracted powerful officials to respect and assist our efforts.
In addition, we developed private - public partnership with wonderful doctors, caretakers and pharmaceutical wholeslers and retailers to stretch every dollar contributed by our Global Giving family of donors. There is no such thing as "too small" a donation if it is budgeted properly. We always tell the kids that they have many people who they have never met who love them and value their lives -- all ten of the original rare disease children from 2009 are still alive and growing strong. We now are helping our partner Philippine Society of Orphan Disorders and the governmental National Institutes of Health to provide monthly nutrition and medical supplies for more than 200 children each month. Sometimes we have to accept there are situations that we can't control or change. However, it is also true that sometimes small miracles can happen.
Vibrant 11 year old Pauline can light a stage with her smile. She is preparing to wow audiences with her singing at an upcoming holiday concert in Manila for children like herself who are healing from cancer and other rare diseases. Just five years ago, Pauline was considered close to death from a liver illness called Pompe Disease. Today, thanks to a global circle of friends, she is able to attend classes for healthy children at her public elementary school. Her doctors consider her a small miracle, healing through love and the proper balance of scarce medicines, many prayers and proper nutrition.
In the Philippines, similar to many other countries including developed societies such as the United States, medicines to treat cancer and other life threatening diseases in children are in short supply or too expensive for many families to afford. In Manila, Asia America Initiative with the help of Global Giving donors is sustaining an interim solution to this shortage for more than 200 children with life threatening illnesses. We are partnering with doctors, nurses, religious clergy, civic organizations and volunteer parents at the National Institutes of Health, Philippines General Hospital and the private charitable organization the Philippine Society for Orphan [Rare] Disorders to overcome this medicine shortage with alternative solutions.
As a cancer survivor, AAI Program Director Albert Santoli understands the all-important support of family and friends, a positive attitude and proper nutrition to help the body’s immune system and to overcome the sometimes debilitating effects of strong chemotherapy and other medicines. “The AAI/GlobalGiving action is a monthly provision of $360 for the purchase and distribution of vitamins and nutritional supplements mixed in milk or fruit juices and also powdered milk,” Santoli explains. “This assures that even while we do our best to make sure that the children’s medical treatments are consistent and timely, their bodies are strong enough to overcome any gaps in formal medicines. This extra effort maintains the children’s morale and fighting spirit. Because they understand that we believe that their lives matter, no matter the social or economic status of their family.”
In a thank you certificate to AAI, PSOD director Mrs. Cynthia Madaraog expresses "heartfelt gratitude" to Asia America Initiative and our donors, "For facilitating the delivery of replacement therapies for patients allowing continual life-saving infusions;
"For the generous donations that enables the purchase of much needed milk formula and vitamins given to patients who are nutritionally challenged;
"For the donation of various medical supplies needed during the patients' regular infusions and occasional hospitalization;
"For all these, the patients have been truly blessed because of your kind and generosity."
In the words of Pauline’s Mom, “God bless all of those people who have cared about us during this difficult period. May God bless your families more.” And in a simple hand-drawn "Thank You" card decorated with a flower filled with small hearts, Pauline simply adds: "Thank you for the help you give to us."
In May 2015, as a result of our successful fundraising via Global Giving’s Bonus Day campaign we have extended our support to children with cancer and rare diseases in the Philippines. Asia America Initiative is assisting the Philippine Society for Orphan Diseases in Manila by providing a monthly budget for nutritional support to close to 250 children under their care. The PSOD works in tandem with the Institute of Human Genetics, which is affiliated with the University of the Philippines under the direction of the national Department of Health.
Since 2007. Asia America Initiative has been supporting children with special medical needs in the Philippines, whose families are trapped in dire poverty. This essential program has saved the lives of close to 100 mothers and children who would not otherwise have access to expensive specialized medicines. With assistance from Global Giving donors, through our AAI “Art of Hope and Healing” program we have been empowered to provide needed nutritional supplements, art materials and toys to boost the child patients’ attitude and inner-strength to overcome their physical disabilities.
We are happy to report that 10 year old Pauline, who is among AAI’s main recipients of the special medicines has now been accepted into regular classes with “normal” children at her elementary school. Although she must continue her monthly medical infusions at PSOD and to supplement the enzyme in her body that she lacks, she is vibrant and enjoys singing, dancing and performing for her family and friends. “Pauline’s recovery and the continued support from AAI and the Global Giving donors is wonderful news,” says Janet Jen Francisco, at PSOD. “It is truly a huge blessing for the patients who badly need nutritional support. In behalf of our patients and their families, we thank you and your donors for your generosity.”
Ms. Cynthia Magdaraog, President of the PSOD is also the mother of a child with a rare disease. “The kindness you have extended special patients, such as Pauline, has ensured their continuous treatment," she states. "We don't know how to thank you enough.”
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.
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