Leadership Development -EQ Training

STORYTELLING

There are so many heartbreaking stories about scoliosis patients and their families who are below the poverty line, and don’t have anywhere to turn, they desperately reach out for help via the Duncan Tree Foundation’s Facebook page for urgent assistance. As a fledgling organization, without a true champion and non-existant PR budget, we were forced to reduce our bi-annual Jamaica scoliosis missions (where we've helped over 120 patients and trained dozens of healthcare providers since 2012) down to one mission this year. And this year we almost had to cancel our annual scoliosis mission to the Philippines (where we've provided 31 free spine surgeries and trained dozens of residents) due to lack of sustainable funds. The story below highlights how we partnered with our local advocate, Amanda Bonife-Kiamko, mostly in her words, to reach out to local Filippino government agencies with the hope of securing strategic partnerships and sustained financial assistance to create a sustainable program and framework for an official scoliosis program. 

ANSWERING THE CALL - AMANDA'S STORY

We all have to face the challenges to raise funds to cover these needs. In my search for resources, in 2015, I reached out via Facebook to the Duncan Tree Foundation (DTF), a US based non-profit organization providing access to implants and free surgery for indigent patients with scoliosis since 2014 (partnering with the Southern Philippines Medical Center (SPMC) Orthopedic Department). 

When I first heard about DTF, I was amazed that a non-Filippino, Ms. Ouida Duncan, President, Founder and Board Chair, would be so passionate about supporting Filippino nationals. I was so grateful for the generous help to the scoliosis community in the Philippines, I shared a small personal donation. The following year, I met a young lady, Dresfie, a few months shy of her eighteenth birthday with a severe case of scoliosis (with a curvature of over 130 degrees). Dresfie was only 12 when her aunt noticed her spine was protruding. Her curvature kept progressing despite wearing a hard brace; so as the disease progressed, scoliosis stunted her growth. To make matters worse Dresfie’s right lung was compressed and she experienced difficulty breathing. 

Sadly, Dresfie lost her mother at a young age and lived with an older sister who was looking after their grandmother, who is bed ridden. After her father remarried, he became distant from the family and chose not to be involved in Dresfie’s life. She felt abandoned and frustrated. She could not afford to go to college due to financial challenges but she still dreamed of becoming an Architect someday. She enjoys drawing and expressed her creativity through her artwork. 

SCOLIOSIS PHILIPPINES ADVOCACY

As we saw the need, emergency funds were raised by selling scoliosis awareness campaign shirts which aided in giving her financial support to buy clothes and food. 

A Facebook page, Hope for Dresfie* was created with the intention to document her story and get support for her dilemma. In 2017, we received good news from SPMC that Dresfie was chosen as one of the beneficiaries for the DTF and SPMC scoliosis mission. We were over the moon with joy! 

Dresfie’s financial barrier was removed when she received her surgery for free. Hallelujah! DTF’s mission was such a big blessing for her and every patient who received surgery after losing hope. Funds were raised through Scoliosis Philippines to cover her medicines, IVs, blood donations, and miscellaneous expenses. A minimal cost compared to the very costly surgery in private hospitals. 

Dresfie's surgery made a huge difference and restored her hope and improved her quality of life. She recovered very quickly, became taller overnight, breathing better and free chronic pain and bullying. She instantly changed from a timid teenager into a confident young lady, able to work and support herself and her family. Beyond grateful for the generous help for Dresfie.  I was inspired to become a volunteer with the Duncan Tree Foundation, and have happily served  since 2017, helping to coordinate with Ms. Duncan and SPMC for pre-operative patient navigation.

MISSION IMPACT

The five DTF-SPMC scoliosis missions, since 2014, has made a huge difference to our country. 31 Filipino beneficiaries, at two hospitals, and their families were saved from the financial burden, public bullying and shaming and are now able to live healthier quality lives with a brighter future. 

In addition to this significant patient impact, the Filippino government has indirectly benefited from not having to pay for expensive implants provided by DTF and DTF's sponsor Medtronic. DTF’s philosophy is to “teach a man to fish”; and has made a point of providing hands-on training and lectures for the orthopedic residents, nurses, anesthesiologists and other healthcare providers at SPMC, Tebow CURE and elsewhere. Now these professionals are better able to assist patients with scoliosis cases pre- and post-op.

In her statement of encouragement to the SPMC orthopedic residents in Davao City at SPMC’s July 27, 2019, Recognition Ceremony, Ms. Duncan underscored part of Duncan Tree Foundation’s mission is providing transformation “...from pain to passion to purpose”. 

As the great Martin Luther King Jr said, “no work is insignificant. All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence.” 

My heartfelt thanks and blessings to DTF and SPMC scoliosis mission for recognizing the advocacy I bring along with Scoliosis Philippines Support Group’s efforts. Serving the Duncan Tree Foundation has been an amazing journey. I’ve noticed an increased sense of purpose, calm and focus in my life since partnering with Ms. Duncan and Duncan Tree Foundation which ultimately improves my advocacy while helping patients and their families. My family now has a deeper understanding and increased curiosity about my advocacy.

Even though this work can be overwhelming at times, I am motivated now, more than ever, to stand strong and stay committed to my advocacy even with my own person struggle with spine deformity.

When you love people and have the desire to make a profound, positive impact to the world. When you believe that kindness can transform someone's future. When you embrace the mission of healing, giving hope and uplifting the lives of the underserved. Witnessing miracles and helping people get a new lease of life are priceless. If you wish to make a difference and significant impact to the less fortunate please support our mission and donate to Global Giving https://www.globalgiving.org/donate/9756/duncan-tree-foundation/

*Note: DTF has expressed permission from Dresfie to use her full name in this article and in captions. 

ABOUT AMANDA BONIFE-KIAMKO

Amanda Bonife-Kiamko is the President of Scoliosis Philippines, a non profit emotional support group for young people suffering from the psycho-social and financial impact of scoliosis in the Philippines. Today, the Scoliosis Warrior awareness Facebook page has over 54,000 followers and from a few members we have more than 22,000 online members with 38 chapters nationwide (in the Philippines) and overseas. 

Over the years we have encountered many challenges. While we needed funds for our awareness campaign which we are able to get support through partnerships and sponsorships getting consultation, x-rays and other diagnostic tests, physical therapy, bracing and the costly surgical treatment were and currently the most challenging especially for the less privileged. The cost of implant alone is more than Php 300,000. A huge dilemma even for an average earning family. So huge that for patients with severe scoliosis end up losing hope, bullied and depressed, for some, feels they are a burden to the family and community. An outcast thrown with hurtful words of body shaming often thinks it would be a better idea to end up dead.

ABOUT SCOLIOSIS

Scoliosis is a condition and deformity of the spine which the spine curves abnormally. It can curve to the right or left in the upper or lower body and it may even have rotation of the spine or a combination of these. The curvature can be mild to moderate to severe. Commonly, it can be seen as a C- or S- curve or increased hunching. It afflicts both girls and boys from every walk of life, regardless of sex, gender, religion and socio economic status but more common in girls. Its complications can be debilitating. If left untreated it can increase the curvature of the spine, cause chronic back pain, breathing difficulties, cardiac problem, digestive issues, poor motor skills, balance and coordination, pressure on vital organs which can aggressively impact the heart and lungs. Worse, it can cause death due to cardio and pulmonary failure. Not to mention the psycho-social aspects of living with a disfigurement which leads to bullying and being ostracized by general society.

According to the American Academy of Neuroscientists https://www.aans.org/patients/neurosurgical-conditions-and-treatments/scoliosis the worldwide prevalence of scoliosis is 2%-3% of the population. With 108 million Filipinos that is 2.16 - 3.24 million likely with scoliosis. Unlike other countries, there is currently no mandatory scoliosis screening program in the Philippines-- yet the incidents of scoliosis is expected to grow higher.  With your support this initiative and advocates in the Scoliosis Philippines Support Group wish to encourage the Department of Health (DOH) to focus more attention to scoliosis, a neglected condition in the Philippines. It is understood that because scoliosis is not listed as a direct cause of death it is not considered life threatening. But the truth is scoliosis doesn’t cause death per se but its associated complications will shorten and ultimately take life. 

Links:

• DTF website
• Sun Star Davao Article
• Facebook_EdgeDavao Article