Lucas Patrick Hardman
Within a few hours of his arrival, doctors became concerned with the fragility of his skin and nails. Lucas’ skin began to blister in his diaper area and the next day he was transferred to Rainbow Babies and Children’s Hospital in Cleveland, Ohio. The small little baby was put in the NICU, where his skin continued to blister and break down. By the time he was a week old, Lucas had formed blisters on his entire diaper area, lower back, and parts of his chest. His tiny hands had to always be covered for fear that he would scratch himself and cause more skin damage.
An amazing pediatric dermatologist, Dr. Joan Tamburro, took charge of Lucas’ care. She informed Brian and Nicole that she suspected that he might have a very rare genetic disorder called Epidermolysis Bullosa, or EB. EB is a rare genetic skin disease where you are missing the “glue” that holds the skin to the rest of the body, causing painful blisters in any area where there is even the slightest friction. Biopsies were taken from Lucas’ thigh and sent to Stanford University, one of the only facilities in the country that can test for EB. The family’s hope was that Lucas would have a mild form of the disease that could improve with age.
The doctors and nurses taught Lucas’ parents how to drain his blisters and dress his wounds. They taught Brian and Nicole how to take care of their very special needs child, and after only a week in the NICU, Lucas was able to go home.
Lucas’ skin continued to worsen. Every day his parents drained his blisters, and every day new ones appeared. He developed severe anemia, acid reflux, and continuously lost weight. His voice became so soft that his cry was barely as loud as a whisper. Two weeks later, the doctor called Brian and Nicole in with bad news. Lucas did have Epidermolysis Bullosa, and he had the most severe form of the disease, Junctional Herlitz. The parents were told that with this type of EB, blisters not only formed on the outside of the body, but also internally on the esophagus, stomach, and lungs. There is no cure and no real treatment. Lucas was terminal and his life expectancy was less than two years. Brian and Nicole were completely heartbroken.
Over the next two weeks, the family watched this amazing baby boy touch so many lives. Despite the constant pain he had to endure, he would gaze with his gorgeous blue eyes as if to say, “I’m okay Mommy. I’m okay Daddy. It’s okay.” Lucas loved to go on walks in his stroller, and ride in the car in his carseat. He also loved to hear his Daddy play acoustic guitar for him. His parents nicknamed him their little monkey man because he arrived with a full head of thick brown hair and was always moving his arms and legs in the air. Lucas’ favorite lullaby was “You are my Sunshine” and his favorite place to sleep was on his Daddy’s chest.
On the morning of June 24, 2011 Lucas began to have breathing problems and doctors determined that his lungs were shutting down. Lucas was enrolled in hospice, so he was able to be home with his family. Brian and Nicole spent the next few hours cuddling their child and telling him how much they love him. They told Lucas how beautiful heaven is and that they would all be together again one day. They told their baby boy that it was okay to let go. Lucas died peacefully in his parents’ arms, surrounded by his family who loved him.
Lucas touched more lives in five short weeks than most people do in a lifetime. He has taught so many people just how precious life is. He has made everyone who ever met him want to be a better person.
“Our baby boy, we love you more than words can ever say. We miss you so much and are so proud of you. You have more courage than anyone we have ever known, and to us you will always be the bravest person in the world. Mommy and Daddy love you so much Lucas.”