Why We Walk
Our firstborn son, Joshua, was born on November 5th, 2015. When he was 2 weeks old, our excitement quickly turned to fear as we soon learned that he had the most severe form of spinal muscular atrophy.
In Joshua's short but full life, he brought daily joy to us and managed to see five different states, the ocean, the beach and developed an infectious smile that brightened every room along the way.
We lived only a few blocks from First Landing State Park in Virginia Beach and took him into the beautiful park many times, enjoying the fall weather and walks along the lakes on the dirt paths. Every day, Joshua would use all his strength and might to breathe, eat, and bring joy to us with his contagious little smiles. Joshua had beautiful, piercing eyes that seemed to be more focused than any infant we had seen at his age. It was his way of communicating. Once Joshua's eyes connected with yours, the intensity of his focus on you was remarkable.
Joshua passed away on January 13th, 2016, ending his battle with SMA. To hear the news that your child has a fatal disease is absolutely devastating. Families all around the world are hearing this news every day. Along with other families affected by SMA, we long for the day when there is no SMA, and where no child or adult needs to be fitted for braces and power chairs, fight for each breath, or lose their battle.
As part of our son’s legacy, we hope to bring more awareness to SMA and funding to organizations that are researching treatments and a cure. We were personally cared for and loved by the organization, Cure SMA. Cure SMA supports the families affected by SMA along with leading in research to find a cure for SMA.
Cure SMA is dedicated to the treatment and cure of Spinal Muscular Atrophy (SMA)—a disease that takes away a person’s ability to walk, eat, or breathe. 8 million Americans carry the gene that causes SMA , and it is the number one genetic cause of death for infants.
Since 1984, we’ve directed and invested in comprehensive research that has shaped the scientific community’s understanding of SMA. We are currently on the verge of breakthroughs in treatment that will strengthen our children’s bodies, extend life, and lead to a cure.
We have deep expertise in every aspect of SMA—from the day-to-day realities to the nuances of care options—and until we have a cure, we’ll do everything we can to support children and families affected by the disease.
Learn more about how you can help us reach a cure at www.cureSMA.org.