We recently connected with Valerie Pappas Llauro and have shared our conversation below.
Hi Valerie, really happy you were able to join us today and we’re looking forward to sharing your story and insights with our readers. Let’s start with the heart of it all – purpose. How did you find your purpose?
Like many people in history, my purpose was thrust upon me in the most unpredictable manner, filled with grief, emotion, and a feeling of great desperation. In 2011, our beautiful five-year-old son, Alexander, who we thought was perfectly healthy, was diagnosed with Duchenne Muscular Dystrophy – something we had never heard of. Duchenne is a muscle-wasting genetic disease that deteriorates all the muscles over time, including the heart and the lungs, and there is no cure. It occurs mainly in boys, and they usually lose ambulation by the time they are 11 years old. Back in 2011, it was like receiving a death sentence for your child. The feeling that my husband and I both had was gripping fear, shock, anger, anxiety, and hopelessness. We did not know how we could continue each day and care for our son and our 3-year-old daughter. with complete fear of the unknown and what was sure to become a very difficult and horrendous, dark future.
As the next year or two went on, we managed to gain strength through prayers of strength and healing, clinging to God, hope, and faith. Some of our prayers were answered, and a newfound strength rose upon us, as we realized that we needed to take action. We began to meet many more Duchenne families and realized that we all faced the same emotional struggles but also we were battling insurance companies for medical devices, home ramps, and remodeling that would inevitably come once they stopped walking and graduated into a power wheelchair full-time. We experienced the difficulties firsthand when our insurance company first denied paying for a stairlift in our home when Alexander could barely walk up the stairs to our playroom when he was seven. My husband and I both come from creative backgrounds in marketing and promotion of brands and feature films, so we knew that we needed to create awareness for Duchenne as well as raise money for scientific research to try and save our son and thousands of others. In 2014, with the support and encouragement of our friends and family, WALKING STRONG was born, and Alexander was 9 years old. We named it Walking Strong, because “walking” is the first ability that is lost as these boys progress, and we wanted to do everything in our power to keep them on their feet. Two years later, when Alexander was 11 years old, our fear had come true and he took his last steps. He could only walk short distances while holding on and the fear of him falling and breaking a bone became greater. He graduated into a scooter which he began to ride to school in 6th grade, and then the dreaded full power wheelchair. At that time, Walking Strong’s meaning changed from “keeping these boys walking” – to “we are walking strong for them and their families.” As the years went on, our foundation grew, and we succeeded in not only raising significant dollars but also raising awareness, Through a chance introduction to Kobe Bryant in 2017, a relationship was formed, and Kobe vowed to help us and shared his interactions with Alexander on his social media, and all of a sudden, millions around the world had heard of Duchenne. Since then, we realized that the greatest need for Duchenne families was help with devices, and handicap accessible vans, which insurance does not cover, and most people cannot afford. We began a life-changing Assistance Program and began to help families purchase handicap-accessible vans, medical devices, and loveable canine support animals, and our newest addition is offering FREE one-on-one mental wellness support virtually to any person with Duchenne as well as their family members. We are truly changing people’s lives and allowing those with Duchenne dignity and support, as well as helping their parents and siblings with the many emotional and financial challenges that Duchenne brings. To date, we have raised over $1.5MM and have helped over 150 families from around the country. Could I ever imagine that my purpose in life would be to serve others who face the biggest challenge of their lives? Could I ever imagine that I, someone in the film industry my entire career, would run a non-profit that helps families from around the country, and even outside the U.S., with needs for a disease I had never heard of prior to my own baby’s diagnosis? No. And that is the beauty and the mystery of life. We never know what our journey and our purpose are. We need to trust the process and have faith, knowing that God is guiding our steps and will always bring us through a trial. It is our job to be open to what life brings and through it find our purpose. I once heard a Rabbi say: “The two most important days of your life are the day you are born and the day you find out why. ” Well, know we know.
Thanks for sharing that. So, before we get any further into our conversation, can you tell our readers a bit about yourself and what you’re working on?
Walking Strong is committed to helping those with Duchenne and their families by raising money for scientific research to help fund clinical trials and a cure as well as assisting families with their needs from around the country, including medical devices, handicap-accessible vans, home ramps, Hoyer lifts, canine support animals as well as free one-on-one mental wellness support. Join us in supporting those with a rare and genetic disease with no current cure.
Contact Info:
- Website: www.walkingstrong.org
- Instagram: @walkingstrongfoundation
- Facebook: https://www.facebook.com/walkingstrongagainstdmd
- Linkedin: https://www.linkedin.com/company/42361097/admin/feed/posts/
- Youtube: https://www.youtube.com/channel/UCQsTg9xTYUc8fVIN2vyE7pA
Image Credits
Curtis McElhinney
