Spirit Award: Emma Rose

Emma Rose Mazurek was born in the afternoon of December 28, 2013.  She was born a beautifully healthy baby girl.  She was a full term baby weighing over seven pounds.  Her little hands and feet were miraculously meticulous and so fine in their tininess.  She was the most perfect gift our family could have wished for to celebrate Christmas and the New Year. Less than two months later, on February 14, 2014 – Valentine’s Day – Emma was diagnosed with a rare and debilitating form of infantile epilepsy called Ohtahara’s Syndrome.  No words could have prepared us for this news or what we would soon experience.  Despite the best efforts of top pediatric neurologists in the country, Emma’s seizures could not be controlled.  She suffered literally hundreds of seizures per day.  These seizures eventually left her unable to swallow, eat and even breathe. On March 12, 2014, after only 74 days of life, we lost our precious baby.  She passed away at home in our arms surrounded by her loving family.  We could never have expected to lose Emma so young and so suddenly.  She leaves a hole in our hearts so big that words cannot describe it.  A baby’s cry will never sound the same to us again.  We only console ourselves knowing that Emma Rose won’t suffer any more and that she is in a better place.  But we all just miss her so desperately. During Emma’s short time with us, we gained more than we ever believed possible from having and holding and loving such a wonderfully special and pure little baby.  Emma Rose taught us all lessons in love, courage and even hope.  For us, we not only have our precious memories of Emma, but we also have her enduring legacy, through which we can only hope to help ease the journey of other families who are struggling to cope with their own children’s battle with epilepsy.  We intend to use Emma’s life as a beacon to lead us to raise awareness and funds for research and treatment so that organizations like the Epilepsy Foundation of Metropolitan New York can help to better the lives of all those children afflicted with seizure disorders. Emma Rose continues to be our inspiration and our constant reminder of what really matters in life.  Emma, exquisite and everlasting in our hearts, we love you and will miss you forever.