BENEFITING: Epilepsy Foundation of Metropolitan New York
ORGANIZER: Epilepsy Foundation of Metropolitan New York
EVENT DATE: Mar 18, 2018
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. For all of us, childbirth is a great miracle. And Emma was no different. Her little hands and feet were miraculously meticulous and so fine in their tininess. Paula and I were very proud and gushing parents.
A short 74 days later, we lost our precious baby. She passed away in our arms at home in the early morning hours of March 12. 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 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.
Emma Rose suffered from an infantile epilepsy called Ohtahara's Syndrome. She suffered literally hundreds of seizures per day. These seizures eventually left her unable to swallow and eat.
When Paula and I were first told the extent of Emma's epilepsy and what it did to her brain and body, I thought we would never be able to deal with it and would be overcome by fear to hold and care for her during her seizures. But Emma showed us how to love. Paula and I felt more love than we ever believed possible from having and holding and comforting this wonderfully special and beautiful little baby. Calming her seizures in our arms were some of the most important acts of our lives.
I have been running long distance races ever since Emma left us. Perhaps I am running to heal, to outpace my sadness, but most of all to remember Emma. And if her memory can inspire any one of you to help the other baby Emmas out there, and to provide those babies' parents the resources of EFMNY, then Emma's life will live on in those we help. I am also running for all of those adults who live with epilepsy every day and are afraid to share this fact with their work colleagues and friends because they don't want to be viewed as someone different or unable. I am running to erase the fear and discomfort that the word "epilepsy" might cause in others or ourselves.
Together we can embrace a child with seizures; we can offer treatment to a teenager who is struggling with developmental disabilities due to seizure disorders; we can help a mom find a safe and fun kids summer camp for children with epilepsy.
Please contribute to the Epilepsy Foundation of Metropolitan New York to bring epilepsy patients out of the dark and into the sunlight of our care and attention.
Do it in the memory of baby Emma Rose, who never had the chance to grow up and be that girl who smiled at me at the finish line. Let us together get to the finish line of eradicating epilepsy and its devastating effects on our children, friends and family.