Soto Family

Lillie, Keagan, Serenity, Armando & Ricardo ​

​For The past 7 years I have been raising my one niece, Serenity and two nephews, Keagan and Armando after the passing of their mother, my sister Priscilla Hernandez.  I pretty much inherited my sister’s children as my very own.  Watching them grow into young, respectful adults has given me so much joy and gratitude, as without them I’m not sure exactly where I would be.  Before the passing of my parents and sister, I vowed to watch over them, knowing that I was actually trying to become financially stable myself.  With the grace of God and a hard working husband and step-father we have managed to make a great life for ourselves.  It wasn’t until recently that we were given some bad news during an annual physical.   They had some alarming news after test results came back on Keagan and told us that we needed to come in as soon as possible.  Being an active cross-country runner and finalist in track and field, Keagan got the most devastating news, one that put his passion and heart for running to a complete pause.  Keagan was diagnosed with Left Ventricular Non Compaction Cardiomyopathy, LVNC, a condition where the muscular wall of the left ventricle of the heart appears spongy.  It can affect the heart’s ability to work efficiently as a pump, and effect the electrical signaling of the heart.  Although it cannot be cured, treatment is available for people who experience symptoms.  Dr. Allender informed us that the other two needed to be tested right away as this was passed down genetically.  We were shocked to hear the symptoms, knowing how active they are and that there was a possibility of one of them going into sudden cardiac arrest.  I remember going home, awaiting the test results on the other two, and seeing Keagan breakdown knowing that this may be the last of his running career.  I remember going home and seeing Keagan breakdown knowing that this may be the last of his running career, Serenity asking me about cheerleading and other sports and the puzzled looked on Armando’s face.  While awaiting the test results on the other two, I can remember the awkward silence, tears running down everyone’s faces that and being asked 50 questions as I was new to the illness myself.  To no surprise, the results came back and both Serenity and Armando were diagnosed with LVNC.  All three of them are living with LVNC and are still undergoing numerous testing and treatments to see what’s best for them.  The kids are coping with it but not allowing it to consume their daily lives let alone their future goals.  Although they are now limited to some degree with their extracurricular activities they have become more involved in the academics.  Living with not one but three loved ones dealing with LVNC has been a constant nightmare, full of worries and uncertainties that one day I might receive a devastating call.  One thing about living in a small town like Winters, is that the faculty and staff at the school are all aware of their situation and are onboard in the event that something should ever happen.  We have all become familiar with the side effects and have educated ourselves to prevent the worse from happening.   
Thank you for taking the time to hear our story and a sincere thank you to Dr. Allender, Cook Children’s Hospital and Casen’s Crew for everything you do for our family.  You guys are amazing!!
 
Lillie Soto
Winters Texas