Cancer treatment for 20 children and 30 women

by Asia America Initiative
Vetted
Baby Brielle
Baby Brielle

There is a wise proverb stated in many cultures that reminds us,"Save One Person and You Save the World." That attitude can especially be applied to the partnership between Asia America Initiative, Global Giving and the Philippine Society for Orphan Disorders [PSOD] in Manila. What began in 2008 as a small spontaneous act of kindness to save the lives of 20 children and 30 impoverished women from cancer has grown into a model for supporting the medical treament of hundreds of children born with rare genetic illnesses. This heartfelt partnership includes medical professionals, pharmaceutical companies, parent and student volunteers and a wonderful over-worked  PSOD coordination staff who helped to shape a sucessful campaign to create a first-ever "Persons with Disability Act" authored by the Philippine Congress.  It was signed into law by the Executive Branch in March 2016.  This law may assist thousands of adults and children with disabilities to have access to medicines previously beyond their families' budgets.  AAI, through our Global Giving donors maintains essential support for nutritional supplements, donated clinical supplies and the cost of required medical tests.

"We thank AAI and your donors for your continuous support," says Janet Fransisco a PSOD coodinator. "The law has been signed, but there is still a lot of work to do before the rules are fully implemented.  We still are raising funds for the supportive care for the children, such as the milk, vitamins and essential medical devices such as ventilators, suction machines, wheelchairs and diagnostic monitoring of the children."

Each child we assist to overcome a life threatening disease is a symbol of hope to their communities in a country where 36 percent of the people struggle below the poverty line and an equal number barely earn a living wage. One of our newest children is 3 year old "Baby Brielle" who was born with a rare disease called "Alagille Syndrome" which can damage the heart,kidney or liver.  Brielle desperately needs a liver transplant within the next three months in order to survive.  She has found a matching donor --  her mother -- who will share part of her own liver to save her daughter.  As always, the cost of the surgery and pre and post operative care is far more than her family can afford.  AAI will start a micro-project to save"Baby Brielle" by reaching out to our Global Giving donors. We are in a partnership with other charitable organizations to cover the costs and other essential needs to complete this process.  Dr. Tom Stern, MD in San Francisco says, "Alagille Syndrome is one of the most difficult conditions a child can have. Many charitable medical centers do not have the precious resources [due to being overwhelmed with many children who have urgent needs]."

AAI believes that making every possible effort to save this one child's life can "help save the world." We invite you to contribute whatever you can afford to our "Baby Brielle" micro-project campaign.  You have our sincere gratitude for your payers and your contributions.

Persons with Disabilities Act celebrated
Persons with Disabilities Act celebrated
PSOD staff briefing government health officials
PSOD staff briefing government health officials
child of psod care with her mother
child of psod care with her mother

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Sharing treatment and Grandma
Sharing treatment and Grandma's Love @ PSOD

This Valentine Day we are very honored to be part of Global Giving's "How to Say I Love You" in 91 Countries program via the Gloabl Giving website.  We are representing the Philippines with our Cancer and Rare Diseases healing program to assist some very special adorable children to overcome the challenges of rare life threatening diseases.  We are honored to work as partners with the treatment and residential centers at the Philippine Society for Orphan Disorders in Manila and the House of Hope in Davao.  We provide supplemental nutrition such as powdered milk and Pediasure multi-vitamin drinks and medical supplies for more than 300 children every month in 2016.  Global giving donors have been a major part of our teamwork for success enabling us to spend around $700 per month to purchase the nutritional support and any supplemental medicines needed for the children's strength and well being.  We have the funds needed for the first six months of 2016 and are seeking expanded donor support to cover the second half of this year's program.

In addition, we are fortunate to have the support of local hospitals in the United States to donate clinical and hospital room supplies to help make the children more comfortable and to take the financial burden from their parents, all of whom survive below the poverty line.  

On Fenbraurty 29, 2016 advocates for children with Rare and Orphan Diseases  are celebrating a day of international awareness around the world.  We hope to make a new delivery of supplies and nutritional support to PSOD and House of Hope on that day as a message to the children and their care providers of our commitment and love.

Ms. Janet Francisco, a PSOD coordinator, is also the mother of a child with special needs.  She speaks for all families of the children being treated in Manila. Janet says, "The dedication and caring shown by our friends at AAI and all of their donors has been a Godsend to  us. We never imagined that there were such kind people who never even met us who would show such encouragement and support in our time of need. We welcome your continued support."

Poster for Rare Diseases Day February 29, 2016
Poster for Rare Diseases Day February 29, 2016
Treatment at NIH hospital in Manila
Treatment at NIH hospital in Manila
Child at PSOD with nutrition supplements from AAI
Child at PSOD with nutrition supplements from AAI

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Children at House of Hope share Christmas gifts
Children at House of Hope share Christmas gifts

The reading hall at House of Hope was filled with Christmas  laughter and awe.  The site was electric with around 150 children from impoverished families undergoing medical treatment for cancer and blood diseases.The arrival of delicious lunches and  giant playful mascots from the Jolibee restaurant caused the children to laugh brought screams of delight, many had their heads shaved bald for strenuous treatment to cure leukemia.  Christmas presents overflowed  beneath a large colorful Christmas tree.  The funds and donated toys wrapped in bright gift-wrap were provided by a consortium of caring local  organizations, including One World Institute and Asia America Initiative and many incredible donors

AAI has added House of Hope, located alongside Southern Philippines Medical Center in Davao iis the largest cancer treatment center in the Mindanao Region of the Philippines.  We are pleased to include the children in Davao to our “Hope and Healing” programs for children with cancer and other life-threatening rare diseases. “This is the only such program for seriously ill children in Mindanao region,” says Dr. Yolanda Stern of One World Institute [OWI]. “What makes it especially heart warning is not only the age of the children – from infants to 12 years  -- but the equal treatment given to children belonging to the three main cultural groups of Mindanao – Christians, Muslims and Indigenous Mountain Tribes.  Many other children and their families sleep outside on the sidewalks because the facilities have no space to house them.”

AAI's cancer treatment program in the Philippines which began in 2009 with supporting 20 children and 30 women, now assists a total of some 350 children in Manila and Davao battling to survive cancer and rare diseases.  As a cancer survivor, AAI Director Albert Santoli supports House of Hope in advocating laughter and creative activities such as music, painting and dance as integrated components for healing.   “When I was told by doctors that I might not survive surgery,” recalls Santoli, “it was the love of kids AAI was assisting, Faith and prayer by family and friends, as well as the joy of helping others pulled me through the fear and uncertainty. To give is an act of empowerment.”

At the House of Hope Christmas Party children undergoing treatment did a gift exchange in front of the decorated tree, which in itself was an act of healing. 

“What a heart-warming afternoon!:  reports Mrs. Pidot Villo, coordinator for OWI at House of Hope. “The smiles on the kids faces, in awe and wonder, tugs one's core... Priceless! “

We admire the skill and professional care provided by the staff and volunteers at House of Hope. We deeply appreciate the support from our Global Giving donors  who come from of all walks of life. Merry Christmas, to you all!

Child undergoing cancer treatment hugs Jolibee
Child undergoing cancer treatment hugs Jolibee
Christmas Party at House of Hope, Davao
Christmas Party at House of Hope, Davao
kids at House of Hopewith a new friend
kids at House of Hopewith a new friend
Fun with Jolibee at House of Hope Christmas Party
Fun with Jolibee at House of Hope Christmas Party

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Building faith for recovery thru loving care
Building faith for recovery thru loving care

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.  

Special children with their Grandma at PSOD
Special children with their Grandma at PSOD
why we can
why we can't give up
Art therapy
Art therapy
AAI  monthly nutrition supplements
AAI monthly nutrition supplements
Special child with AAI nutritional supplements
Special child with AAI nutritional supplements

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Pauline, holding banner & AAI Dir. Santoli at PSOD
Pauline, holding banner & AAI Dir. Santoli at PSOD

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." 

Special child at PSOD receiving infusion
Special child at PSOD receiving infusion
Testing new patient
Testing new patient
play therapy
play therapy
children singing  with joy after treatment
children singing with joy after treatment
AAI-provided nutrition and powdered milk
AAI-provided nutrition and powdered milk

Links:

 

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Organization Information

Asia America Initiative

Location: Washington, DC - USA
Website: http:/​/​www.asiaamerica.org/​
Project Leader:
Albert Santoli
Washington, D.C United States
$22,816 raised of $30,000 goal
 
440 donations
$7,184 to go
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