After moving away from her hometown of Laquey, Missouri, a stone's throw from Army base Fort Leonard Wood, Alicia Harper found herself a single mother to two beautiful girls, working in corporate restaurant management.  After falling in love and marrying her coworker turned husband, James, in 2008, the couple prepared for James' induction into the Navy and faced one of the most challenging experiences of their lives.

The excitement of adding a new member to their family was soon quelled with the news that their baby may not survive to term.  Doctors diagnosed Brayden Alexander in utero, explaining that he appeared to be suffering from a brain abnormality that would likely take his life.  Faced with the difficult decision of whether or not to see the pregnancy through, the Harper's chose to continue in hope that the doctors were wrong about the severity of Brayden's condition.

On June 30, 2008, the Harper family welcomed Brayden into the world and an MRI revealed that he had a condition that results in missing areas of the brain's cerebral hemispheres.  At the time, the family was not given a formal name for the disorder and was encouraged to sign a ‘Do Not Resuscitate' order, leaving him in the care of the hospital staff for the rest of what was expected to be a short life.

"We declined. We brought him home with us, to love on for the days we would have him with us," Alicia explained.

The future was uncertain but the family moved forward, relocating to South Carolina while James headed off to boot camp at Great Lakes.  Alicia was a stay at home parent for the first time after more than a decade in the workforce and began juggling her family commitments while advocating for her son's medical needs. Her integration into the Navy family was complicated by the fact that Brayden's condition would often require her to cancel plans or involve activities he could not participate in, isolating them from the support of fellow military families.

After a time, James was granted humanitarian leave in order to stay home with the family and help care for Brayden.  Alicia continued to advocate for her son, convinced that he could enjoy an extended quality of life with a few changes to the prescribed care.

"We should have known that we were on a long road of unknowns when he never displayed any of the worrisome symptoms the doctors had told us he would have. He continued to grow and thrive, after a few pushes with the doctors to get him the level of care he needed," Alicia explained. "The days we were told we would have him turned into weeks, then months, and then years."

Brayden's formal diagnosis was hydranencephaly, a very rare disorder with no known cure and rarely linked to a specific cause. Children with the disorder exhibit symptoms in a wide variety of ways and the growing online community of families dealing with the same diagnosis was helping to provide Alicia with information and support.

"By 2010, I had connected with several families who had a child with the same diagnosis as Brayden - as well as several military families of children with special needs, since our journeys were similarly challenging. As a parent to a medically complex child, we had been reminded often of how fragile his life was and our support system was one full of grief.  Families often lost their children to hydranencephaly, after all, the diagnosis was terminal. I knew that there needed to be greater support to the families we had connected with and I wanted, somehow, to memorialize Brayden's name and the huge light he was shining on the world with his journey through the impossible."

During moves from South Carolina to Virginia and eventually to Navy Base Kitsap in Washington state, where James is currently based as a radiological controls technician, Alicia continued to reach out to other families online.  Her drive eventually resulted in the development of the Brayden Alexander Global Foundation for Hydranencephaly in 2011, now known as the Global Hydranencephaly Foundation.

On the morning of Nov. 15, 2012, shortly after James had left to meet his ship in Hawaii, Brayden passed away suddenly. "Although Brayden's diagnosis was terminal, his passing that day was unexpected. I barely knew two people here. The command ombudsman was here in an instant and we were showered with support by our new Navy family," Alicia remembered.

Brayden's memory lives on daily in the work of the Global Hydranencephaly Foundation and his mother's inspirational drive to make an impact.  Alicia is currently completing her bachelor's degree in special education at Western Governors University, running the foundation Brayden inspired, and working as a paraeducator at a special needs preschool in Kitsap.

For more information about the Global Hydranencephaly Foundation or to provide support, visit www.hydranencephalyfoundation.org, donate by shopping online with Amazon Smile or iGive, or volunteer at the foundation's next retreat in June.  Email Alicia at President@HydranencephalyFoundation.org to learn more.