Henry Mazurek wrote -
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. To me, 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 be the ones to suffer having to find a way to care for her many needs, but at least she would benefit from our care. Now, however, I know that it was actually the other way around. It was only Emma who ever really suffered and it was us -- Paula, me, our family and close friends -- who gained more than I ever believed possible from having and holding and loving such a wonderfully special and beautiful little baby.
I am racing for all of the baby Emmas out there, who need our love and support. I am racing 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 kids with epilepsy.
Please contribute to the Epilepsy Foundation of 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.
I love you Emma Rose!