Interviewed by : Michel Fontaine. CEO. TransacXion Technologies Corp.

She's been passionate about giving back since the very first time she saw a telethon for the under nourished and destitute children in the world. Today she's actively engaged in changing that landscape and has become the voice not only for the poverty stricken faces but she is fighting to remove the stigma of disability.

How did you became interested in your field? Luckily, I knew from quite a young age that I wanted my life to be one devoted to service; it was never in question, “what do I want to do when I grow up?”. In school, I was interested in and concerned with world affairs and serious issues facing children, like poverty, famine and war. Televised telethons mercilessly showed us images of starving children, a nightmarish sight that fueled me with a furious drive to be a part of ending such injustice and cruelty. Nothing seemed worse than knowing about what was happening around the world and not doing anything to help the suffering, forgotten, abandoned and oppressed. I was a passionate and impassioned child, to say the least. Luckily my Social Studies class showed me what path I must travel in order to fulfill this childhood prophecy of a life of service: The United Nations! I was clear that if I would join the humanitarian agencies that were providing the basic necessities, saving lives, and fostering opportunities for people to survive with dignity. And so, the journey to join the UN began, a long route of volunteer canvassing, learning languages, studying abroad and earning my first degree in International Development leading me from college to the World Food Programme, the food aid agency of the UN. From there I was living my dream!

What are some of your most memorable moments with your humanitarian work? The adventurous, raw lifestyle (white water rafting in the Ecuadorian Amazon, strolling through Colombian coffee hills, ATV-riding Namibian sand dunes, buying live lobsters from Angolan fishermen right off the boats), sleeping in a shipping container in Haiti, the appreciation for the most simple of things (care packages sent from home with deodorant, chocolates or a fashion magazine) and in the face of the poorest and most vulnerable people in the world an ever-present perspective of how fortunate and rich my life was, just by product of where and to whom I was born and raised. Living in developing countries transformed the way I looked at the world, saw myself and what should really matter. Surrounded by dedicated, brilliant professional humanitarians and some of the poorest of the poor who consistently persevere in the face of adversity with an unbelievable will to survive, my calling and sense of belonging was profoundly felt.

What projects are you currently working on and what kind of preparations are you doing to get yourself ready for it? For the past couple of years, I have been scheming and planning my biggest and most ambitious challenge yet, a mission that will include extreme tests of strength, endurance and danger. Poised at the North Rim of the Grand Canyon, along with an entourage of film producers, horse wranglers and whitewater rafters, I will begin a 12-day expedition to attempt to cross from rim to rim. Starting on horseback we will descend nearly 6000 feet of vertical loose terrain into the country’s deepest canyons. Three days later when we enter the heart of the Inner Gorge, we will encounter the Colorado River, America’s lifeblood of the West. Here where the water meets the rocks, we will dismount from our saddles and set off by boat, for 8 days navigating over 150 miles of the United States' biggest whitewater rapids. Throughout this journey, in a harsh and unforgiving wilderness, the expedition will challenge and highlight the integrity of the human spirit, contrasted and framed by the majesty and grandeur of this Natural Wonder of the World.

Under the direction of U.S. Army Ranger Staff Sargent (Retired) John Masters – who just happens to be my gorgeous husband - the Grand Canyon Expedition will be filmed to create a documentary called HIBM: Her Inescapable Brave Mission, a story that encapsulates the fear, excitement, ambition, determination, courage, and relentless psychological and physical struggles that come with living with a debilitating progressive disease and breaking down endless barriers faced by people with disabilities. I will candidly share my most raw and intimate thoughts and feelings about my unexpected life and this recent diagnosis.

Chastain Horse Park, a 501(c)(3) in Atlanta, is our charity partner and also the haven where I am training with Therapeutic Program Director Kelcy Rainer, a PATH (Professional Association of Therapeutic Horsemanship) International instructor, who will also be accompanying us on the expedition.

We are currently searching for sponsors and documentary coverage of the expedition and broadcasting network for distribution. The full story, including human dimensions, as well as extraordinary physical limitations will be developed, captured and presented to a world-wide audience. Without the necessary funds we won’t be able to make this happen. Fingers crossed we find the right sponsor and network!

Describe your platform with disability? Growing up as active as I did, I never fathomed that my purpose in life would come out of my greatest vulnerability, a traumatic and at the time, unbelievable prognosis. In this struggle that has been living with a devastating muscle wasting disease that leads to severe incapacity within 10-15 years of its onset (and I am 17 years in since my onset), I have found an unmatched strength and relentless courage, an insatiable appetite for adventure and an incredulous appreciation for the sense of triumph that comes with overcoming obstacles. From sitting up in bed to climbing stage stairs to address an audience of hundreds, daily barriers, both big and small, make for an absolutely exhausting yet richly satisfying new day, almost every day. It’s sad how many times I am praised for continuing to live my life as I always have since my diagnosis at the age of 30, refusing to give up my international career or desire to dress up or commitment to live life to the fullest while I still can. It’s really not so audacious to believe that I can still achieve anything I put my mind to.

This is the message I want to share to anyone facing adversity.

It was in Haiti in 2011, that I expanded my advocacy platform from just my personal realm into my professional world, then wearing legs braces and using two canes to walk, there was no way to hide that something serious was happening to my body. Our Representative (head of mission), Francoise Gruloos, gifted me the role of “Disability Focal Point” for UNICEF Haiti. What a Hercules responsibility I was gifted, one I entered humbly ignorant but eager to learn. It was in this space I met the most brave, inspiring and resilient women and children with disabilities, fighting for survival from the stigma associated with having an impairment and striving to be recognized as human beings who by law have the same universal rights to life, a birth certificate, adequate health care, quality education, safe play and decent employment, basic human rights we take for granted. It is their strife that powers me through my own uncertainty, hopeful and actively engaged as a voice for the largest minority in the world, namely, people with disabilities.

How many countries have you been assigned with UNICEF? After working in Ecuador, Panama and Shanghai, I had the honor of taking UNICEF assignments, of varying lengths from 4 months up to 3 years, in another 7 countries: Angola, Botswana, China, Madagascar, Thailand, Haiti and the USA. Each experience made a fervent impression on me. It is my sincere wish to one day go back to the field with a humanitarian agency. And if I could choose where, it would be somewhere in the Middle East in service of the innocent children unjustly affected by the devastating war in Syria, a humanitarian crisis that we are not doing enough to stop.

What does it mean to be The Muse? Any platform that respectfully facilitates the opportunity to shatter stereotypes about people with disabilities is one that I pleased to be a part of. When most people think of who might be “The Muse”, I bet you their first thought is not a woman with a severe physical impairment. Women with disabilities are regularly left out, shunned and discriminated against, first because of our impairments and secondly because of the limitations society labels us with, in terms of what we are capable of, who we are and what we achieve in our everyday lives despite the never-ending barriers we face. There is little faith in the power, integrity and perseverance of the human spirit. Or maybe as a society we are not taught how truly capable we can be when faced with tremendous trials and tribulations, Maybe, for that reason society still doubts other people’s abilities. It’s true that, where there’s a will, there is a way. One of my favorite quotes is by my friend, Erik Weihnemayer, the first blind person to summit Everest: “What’s within you, is stronger than what’s in your way.”

The Mavericks & The Muse