First and foremost, we are a family not solely defined by our past or present situations. Our family is not one of just ancestries, but we are a family of circumstance. It is that circumstance that shaped our family for the better. It has given way for the pursuit of a better current and future life for not just our family but all families. We are the Boczars. Americans currently living in Norfolk, UK. This is where our journey began.
Lilliana Elizabeth Boczar was born on December 9th, 2013. We were so excited to experience traveling with our new baby girl by our sides. In her first year, we visited castles, historic estate homes, cathedrals, safari parks and world landmarks throughout England and Wales with family and friends. Even when we noticed she wasn’t progressing, we balanced early intervention therapy and life. We are not defined by our situation, and we were not going to let Lilliana be defined by hers. We kept living.
Teamwork, communication, perseverance, faith, and love were the elements that guided us through the trials and tribulations. Upon receiving our first diagnosis of Williams Syndrome, we grieved, but we learned to accept our situation. We thought we had the answer, and we continued to live. We balanced trips to Belgium, Germany, Austria, Scotland, and Italy with therapy, syndrome conferences, and community support groups. No diagnosis was going to define our girl. Then out of the blue, she began to slip away. She stopped progressing, she lost her small vocabulary, and the hand wringing began. As we began to look for answers, we never stopped living. We still attended community gatherings and traveled through Italy, Greece, Croatia, and Montenegro. We fought for more therapy after her diagnosis of autism. After suffering from multiple focal seizures, more visits with neurologists, neurophysiologists, developmental pediatricians, a trip in the ambulance and admitted to a hospital, Lilliana was diagnosed with Rett Syndrome from further genetic testing. We never imaged this would happen, but now our baby girl is battling a much harder life than we ever could’ve imagined. She struggles daily to do basic functions like eating, breathing, walking and using her hands. Some days those functions that were there have disappeared. She is the only medically documented case in the world with both Williams Syndrome and Rett Syndrome. We may have no idea how both will affect each other, but they won’t stop us from living.
It wasn’t the life that we planned for, but this is the life we live. We continue to travel even with the added complexity. We live for the continued travel adventures of taking her to Disney and more places. We live for the challenge. We live for each other. We live to help others. We Live for Lilliana. We have lived to help others by working with several charities, but there was one that was there at the start, Girl Power 2 Cure (GP2C). No matter what the future holds, we will continue to support GP2C because they support us. All of us. We could choose to sit on the sidelines or we could choose to live. We chose to always be Living for Lilliana.
