I met little Randy when I was pregnant with my second child. Little Randy’s father is a police officer and worked the same zone as my husband. We would visit and have cookouts. They had four wonderful children, but their little Randy was special. He was born with a rare disease that made his skin as fragile as butterflies’ wings.
The disease is called Epidermolysis bullosa or EB for short. This disease racked little Randy’s body, fusing his fingers and toes together. He wore wraps over injured skin. The injuries came from the most innocuous places: a blanket brushed his skin too roughly; his clothes rubbed him the wrong way. Even his insides took a beating. He needed a feeding tube because food could cause injury to his esophagus.
I remember how much little Randy loved to watch cooking shows. I wonder if he fantasized about the foods he couldn’t eat. He also loved to watch the show ‘How it’s made.’ He was a smart young man but couldn’t go to school like other children. He was homeschooled. His parents spent long hours making sure little Randy was comfortable day in and day out. But more than that, they made sure little Randy lived. The family didn’t let it stop them. They lived life together as best they could. I remember little Randy’s mother, small in stature, picking Randy up from the stroller to give him a better view. If it hurt her back she didn’t show it. She would carry him for hours and wear a smile, relishing in the closeness of her child.
As we got to know the family better my baby girl, not yet two, would wonder at little Randy. Her innocent eyes would grow wide in fascination over the boy who wore so many bandages. “Be gentle.” I would tell her. She would toddle over and give little Randy a kiss on the arm as if to heal the ‘boo-boos’.
^This picture is of little Randy and big Randy holding my son the day he was born.^
One day, hanging out at their house, they put in a home movie. I watched as the scene unfolded: It was little Randy’s birth day. The father held his wife’s hand, brushing hair from her face before one last push. They were about to welcome their son into the world and nothing could be more exciting or wondrous. As little Randy came into view I watched the medical staff begin to rush about. Mixed emotions swam on the father’s face. I could see realization dawn right there; a moment of joy and worry forever captured. They knew something was wrong. The staff didn’t know yet that little Randy had EB. They could see the newborn’s raw skin but continued to clean him routinely, not knowing they were causing so much more damage than the trauma of birth had already done to his tender skin.
He lived in pain but the pain did not define him. The family chose to live life and not wallow. Little Randy lived 18 years until heaven called him home. He died June 1st 2015. Why do I share this with you? Because the family touched me. Little Randy’s life mattered. His life continues to matter. I want people to know about the disease. I want for little Randy’s parents to grieve his loss without worry over the medical bills that piled up over the last 18 years. If all the brothers and sisters of law enforcement gave just a dollar, what a difference it would make. Thank you for taking the time to read this story. Thank you for considering a small donation to help a grieving brother and his family.
Click little Randy’s picture below to help:
Click on the butterfly below for a link to his obituary:
Click the officer down logo below to support through their campaign for little Randy:
If you don’t want to donate through go fund me, you can walk into any Huntington National Bank and make a donation under the ‘Randall L. Mayhew memorial fund’.