My husband and I met in 2008 while we were in a graduate education program at Ashland University. We fell in love, got married, and started life the way many newlyweds do – without much in the way of material possessions. We thought this would probably be as rough as it would get. When our parents warned us that marriage would involve trials and tribulations, we nodded our heads, with neither of us imagining what the future would hold. Our beautiful daughter Brielle was born on December 17, 2013. Tyler and I were overjoyed. But soon, Brielle was suffering from everything from ear pain, aspiration, pneumonia and the lists and tests would continue. Our car was practically driving itself to Nationwide Children’s Hospital, almost an hour away from our home in rural southern Ohio. We could not figure out the root cause of Brielle’s many health issues. Then, in October 2016, we received a call I will never forget. Brielle’s Neurologist, Dr. Emily De Los Reyes called to diagnose Brielle with GRIN2A, a rare genetic disorder characterized by the lack of a 16th chromosome. Tyler immediately told the doctors to give her his chromosome, but they informed us this was not possible. There was no cure. 

In the years since that phone call, Brielle has been diagnosed with epilepsy, asthma, severe intellectual disability. She has weakened muscle tone and a compromised immune system, and she is non-verbal. My husband and I wake up with Brielle in the middle of the night when she gets restless or experiences a medical situation. We carry her up and down the stairs and around the house when she doesn’t have the strength to do it on her own. We administer several types of medicine to her sometimes twice daily. Then there are the times I’ve needed to administer the emergency medication, with my younger daughter, Reese watching on. Our family has made hundreds of trips to Nationwide over the last nine years; I have two grocery bags filled to the brim with hospital bracelets and visitors’ bands. These are visual reminders to her and our family that this is what we have accomplished together and as we move forward in this journey. But my girl’s a fighter. She can take an IV like a champ; I cannot. She can deal with the many pokes and prods of a hospital visit; I turn away. I dread the moment when I have to place her small body into the surgeon’s arms for yet another procedure, yet she always seems to be smiling in the recovery room. We consider Nationwide Children’s Hospital to be our second home at this point. And although spending much of our lives at a hospital is not ideal, I can say that Nationwide has made it the best experience it can be. We consider Brielle’s doctors and other staff members to be family at this point. They care about her, and they consistently help my family make a stressful situation just a bit more tolerable. For that, we cannot be more grateful.