Josh Cares Provides Comfort and Companionship When Families Are Not Able to Be There
Amazing things can come from the most unimaginable tragedies.
Josh Helfrich was a loving, energetic and compassionate 11-year-old boy who made everyone around him smile. He loved football, his friends and chocolate (in all forms), and he was always there to lend a hand or a sympathetic ear when someone needed help.
Tragically, Josh’s life was cut far too short after he suffered a traumatic brain injury from a bicycle accident in 2004. He spent eight days in the Pediatric Intensive Care Unit (PICU) at Cincinnati Children’s, and his family was by his side nearly around the clock. They talked to him, held his hand and finally, had to let him go.
While Josh was in the PICU, his parents, Mark and Ann, noticed that there were some patients who never seemed to have family with them. They were struck by these children, and in the midst of their own tragedy, Mark and Ann worried about them. Even after losing their son, the Helfrichs couldn’t forget the kids who were alone and scared.
When close friends, Dan and Lynn Pierce, approached the Helfrichs about doing something to benefit Cincinnati Children’s after Josh’s passing, the lonely kids in the PICU immediately came to mind.
“Our original intent was to have a single fundraiser that would memorialize Josh and reflect his spirit,” says Dan. “But when the Helfrichs suggested something to help the children who were hospitalized without their parents by their side, it quickly became clear that this couldn’t be addressed with a single fundraiser. It was a need we couldn’t let go of, and soon Josh Cares was born.”
At any given time, there is an average of 25 critically or chronically ill children who are “alone” at the medical center. Whether it’s because of work obligations, caring for other siblings, lack of resources or sadly, social situations, sometimes parents simply aren’t able to be with their child during treatment.
Josh Cares helps ensure that no child feels alone or abandoned during their stay at Cincinnati Children’s, and that parents who aren’t able to be at the hospital regularly, are still able to feel connected to their child’s care. They fund professionally trained Child Life Specialists who serve as surrogates for, and links to, families who would be with their child if they could.
What began in 2005 with two Child Life fellows in the PICU, has grown into six full-time positions in all critical and chronic care units of the hospital. The Josh Cares Child Life Specialists collaborate with care providers to address the psychosocial and developmental needs of children when their parents can’t be with them.
In addition to serving as an advocate for parents and sharing important information and updates about their child’s care plan, the specialists prepare children for medical procedures – providing support, comfort and distraction.
For Mark and Sara Runyon of Huntington, W.Va., the Josh Cares program has given them peace of mind.
Last December, Mark and Sara welcomed triplets – Liam, Max and Jude – into the world. The Runyons’ joy over their new babies was quickly overshadowed, however, with fear. The boys were born at only 25 weeks and were each under 2 pounds and less than 12 inches long. The three tiny brothers faced a tough battle with serious health issues.
The Runyons lost little Max at only 8 days old. Mark and Sara were devastated, but had to focus on saving their other two newborn sons who needed surgery to help prevent further complications to their tiny hearts and lungs. They wanted Jude and Liam to receive the best possible care so they made the decision to travel to Cincinnati Children’s.
While Mark and Sara wished they could spend every moment with their boys, the reality was they had three other children and jobs 155 miles away at home in Huntington. They were only able to visit Jude and Liam on weekends. This is why the Josh Cares program became their lifeline to their sons.
Liam was able to go home to Huntington this summer, but later developed complications and spent time in and out of his hometown hospital. Little Liam lost his battle in late September.
Jude continues to be treated at Cincinnati Children’s, and his prognosis is promising. While he has ups and downs, he is making progress, and his parents hope to bring him home soon. Until then, the Runyons are grateful for the support of Jude’s Josh Cares Child Life Specialists who give him the care and comfort he needs when they can’t be with him.
“I can’t say enough about how wonderful this program is,” Sara says. “They provide a family environment when we can’t be there. I feel so much more at ease knowing someone is holding Jude and supporting him when we can’t.”
The Josh Cares team spends one-on-one time with Jude – reading, playing and soothing him through tough medical procedures. They also keep in close contact with Sara and Mark – sending update emails and pictures and even giving big sister, Ava, a special teddy bear with a breathing tube, just like baby Jude’s.
Partnership Makes the Difference
Josh Cares recently hit a philanthropic milestone – giving $1 million in support of the Child Life Specialist program at Cincinnati Children’s.
“Josh Cares makes it possible for Child Life Specialists to concentrate their time supporting children who are alone for most or even all of their hospitalization,” says Sharon McLeod, director of the Division of Child Life. “This is a tremendous gift to children who may be feeling lonely or abandoned. We are so grateful for how Josh Cares helps us change the outcome.”
Mark and Ann Helfrich think that Josh Cares is the perfect way to memorialize their son. “This is exactly the type of program he would have loved and the kind of impact that he would strive to achieve,” says Ann. “Whenever I hear of a child whose life has been made better because they did not have to walk alone, I know that the spirit of my son is being honored.”