The past nine months have been our greatest battle, and we couldn’t be prouder of our son, Parker. While stationed overseas due to Lyle’s military service, we realized that the healthcare system there could not meet Parker’s needs. After much deliberation, we requested to be transferred back to the U.S. to ensure he received the care necessary for his survival.
In March, our world turned upside down when Parker was hospitalized with mysterious conditions that led to life-threatening crises. We felt helpless as we navigated through countless appointments, labs, and therapies, praying for answers. In June, we finally received a diagnosis: SCN2A, a rare genetic mutation that brings a cascade of challenges, including severe early-onset epilepsy, cortical visual impairment, global developmental delays, and failure to thrive. Parker has been hospitalized eight times since birth, each stay filled with fear and uncertainty as we fight to manage his debilitating infantile spasms. The sight of our sweet boy, reliant on an NG tube for his medications, breaks our hearts daily; he is on more medications than any child should have to endure.
Yet, through it all, Parker captivates us all with an unyielding spirit that we have adored since day one. While there is currently no cure for SCN2A, we hold onto hope—not just for Parker, but for everyone affected by SCN2A-related disorders. We believe in the incredible work of the FamilieSCN2A Foundation and the dedicated clinicians and researchers involved. We remain hopeful that a cure will be found in Parker’s lifetime. For now, our journey continues, fueled by the love and strength we draw from our family, friends and the entire SCN2A community, helping us move forward each and every day.
