On the patient care unit 3 East at Nemours/Alfred I. duPont Hospital for Children, patients come and go — each with a unique story and all leaving a memory behind. But the life and story of one patient, who was a regular visitor to the unit, left an indelible mark.
Gavin Owens was born with a form of mitochondrial disease, a rare genetic disorder that prohibits the body’s ability from producing enough energy for cell or organ function. About one in four thousand children in the U.S. develop mitochondrial disease by the age of 10 years. In Gavin’s case, the disease affected multiple organs, requiring roughly 50 hospital visits to 3E. When Gavin succumbed to the disease on November 8, 2009 at the age of three, he was surrounded not just by his immediate family, including mom Karen, dad Adam, and 4-year-old sister Madison, but also by his hospital family—the doctors and nurses of 3E.
Despite their grief, as their blog at www.gavinowens.com will attest, the Owens family has found there’s “so much hope and joy to be seen through the dense fog.” One source of joy is in giving back, and they have found a number of ways to honor their “little fighter’s” memory through acts of generosity and gratitude to the duPont Hospital for Children. “It feels so incredibly awesome to give back to the place that has given us so much!” says Karen Owens.
The first kind gesture by Gavin’s family, who reside in Boyertown, PA, was to donate Gavin’s baby warmer to the hospital. "Gavin struggled with significant hypothermia when sleeping,” explains Adam. “Like the many other pieces of medical equipment, his life depended on it. It helped keep him warm and gave him the chance to grow."
Then they nominated Dr. Christopher Raab, Gavin’s doctor throughout his three and a half year battle with mitochondrial disease, for Nemours’ 2009 Physician of the Year. In the nomination letter, Karen and Adam wrote, “We were never alone -- not once did we feel we were doing this alone. Dr. Raab allowed us to be part of the team. He kept us grounded and also helped us find hope when we struggled to find any hope at all.”
A unique donation came on Friday, January 8, 2010, when the entire family came back to 3E to make a donation of BabyLegs, leg warmers that Gavin wore his entire life.
“Having a child with tubes is difficult,” explains Karen, “but trying to find clothes for a child with tubes can be even more challenging. BabyLegs provide a great way of keeping their little legs warm without having to have them in pants. Gavin loved his BabyLegs and we did too!”
Just a month after Gavin’s death, the Owens family launched a campaign to collect donations of new BabyLegs; and soon thereafter; the BabyLegs company promised to match the number raised. It culminated in 13 large containers filled with nearly 2,300 new pairs of BabyLegs, to be stored in “Gavin’s Closet” on 3E as well as other units of the hospital whose patients stand to benefit from this gift.
“I love spreading the word and letting people see how easy it is to give back,” says Karen.
Another step in the healing process for Gavin’s family is helping other families of children with chronic illnesses. "Living life with a chronically ill child can be very difficult,” says Karen.
“During Gavin's 3 1/2 years of life we realized the importance of community—finding other families who have walked or are walking the same path as us, people who can identify and relate to the emotions only another mother or father of a sick child would understand. We had to search for this support—and we don't want other families to have to look so hard."
This led to working with hospital social worker Jennifer Fenstermacher to form a support group called Chronically Cool Families. They will begin meeting in March.
“The lack of a support group was one of the missing pieces we discovered during Gavin's illness,” Fenstermacher explains. “This is my opportunity to partner with Gavin's family to honor their son and create a safe place for parents to talk about the challenges and joys of caring for a child with a chronic illness. Gavin and his family reminded me why I do my job and I will forever be grateful to them for that.”
Anyone who has met the Owens family cannot help but be touched by their warmth of spirit and compassion. And now many more families, and little legs, will feel the warmth of their generosity.