Meet Madelyn DeMore. In July 2008, right around the time that Madelyn turned a year old, she began to experience tremors in her arms. Uncertain as to if they were normal or not, Madelyn’s parents, Jack and Melanie, waited a few days before taking Madelyn to the emergency once the tremors became more exaggerated. While at the hospital, Madelyn experienced a seizure. At first, doctors assumed that the seizure was due to her fever and planned to discharge her, but shortly before discharge, she had another seizure – this time, without a fever. Madelyn was sent to a more specialized hospital, where cloudly white matter was found in her brain. From there, Madelyn was diagnosed with a rare genetic mutation known as Alexander’s Disease. Madelyn’s main struggle is keeping her seizures and tremors under control. Without this, she is unable to develop physically or mentally. Daily, Madelyn is challenged by the tasks that many of us take for granted but somehow, she remains perseverant and strong even in the face of pain and struggle. To learn more about Madelyn’s journey, visit her caringbridge. Butterfly Kisses has been blessed to be a part of Madelyn’s courageous fight against Alexander’s Disease.
Update: Sweet Madelyn passed away on November 8th, 2012. Please continue to join us in showing support to her family as they mourn the loss of their baby girl.