Shane's Story
The Gift of Unconditional Love
Shane DiGiovanna, 24, has been an employee at Cincinnati Children’s for almost one year—but he’s been a beloved member of our family for much longer.
“I’m alive today because of Cincinnati Children’s,” he says.
Shane came to us as a patient when he was 2 years old. He was born with severe Epidermolysis Bullosa (EB), a rare genetic disorder that causes extremely fragile skin and lifelong complications.
“About 60 percent of my skin is missing,” he explains. “The majority of my wounds are chronic and have been there for well over 10 years. They never really heal; they just get a little smaller and then get larger again.”
Shane’s had more than 150 surgeries and is seen by our EB Center, one of a few in the nation that provides comprehensive care for this rare condition. There, teams from every specialty come together to address and manage all the parts of care for a patient with EB, from nutrition to hematology to GI.
Over the years, Shane has volunteered as a member of our Patient Family Advisory Council (starting at age 12 as the youngest member) and as a Cincinnati Children’s Champion, a role where he represented the medical center in the community and at fundraising events.
Shane's Story
The Gift of Unconditional Love
Shane DiGiovanna, 24, has been an employee at Cincinnati Children’s for almost one year—but he’s been a beloved member of our family for much longer.
“I’m alive today because of Cincinnati Children’s,” he says.
Shane came to us as a patient when he was 2 years old. He was born with severe Epidermolysis Bullosa (EB), a rare genetic disorder that causes extremely fragile skin and lifelong complications.
“About 60 percent of my skin is missing,” he explains. “The majority of my wounds are chronic and have been there for well over 10 years. They never really heal; they just get a little smaller and then get larger again.”
Shane’s had more than 150 surgeries and is seen by our EB Center, one of a few in the nation that provides comprehensive care for this rare condition. There, teams from every specialty come together to address and manage all the parts of care for a patient with EB, from nutrition to hematology to GI.
Over the years, Shane has volunteered as a member of our Patient Family Advisory Council (starting at age 12 as the youngest member) and as a Cincinnati Children’s Champion, a role where he represented the medical center in the community and at fundraising events.
On Thanksgiving Day 1998, Shane met his new best friend.
He’s among the first wave of patients with EB to survive childhood and one of the very first with severe EB to go away to college. He graduated in 2021 from Rice University in Texas.
After graduation, he headed back home to remain close to Cincinnati Children's, where he’ll need lifelong care. Then he landed his first full-time job here. He joined our Development Department this past year—starting a new role within the Cincinnati Children’s family—but certainly not his last.
Every Day Matters Shane works as a donor relations specialist where he helps raise money for the medical center. It’s a cause that’s become deeply personal to him, and even more so in the last few months.
“For a long time, I’ve been thinking about a creative way to give back, and keep giving back, even after I’m gone,” he says. “There’s really no such thing as getting better with EB, particularly as you get older, so I want my legacy to continue.”
Earlier this summer, just a few months into his new job, doctors found a severe form of skin cancer on a large part of his back. It was his second cancer diagnosis in two years. The first one showed up in his hand in 2020, and doctors were able to remove it.
“People with EB are at much higher risk of getting extremely aggressive skin cancer,” Shane says. “This most recent diagnosis is much worse than my first.”
Fighting stage-three cancer is his biggest battle so far. Without treatment, it could be fatal in one to two years. But he knows his beloved Cincinnati Children’s care team is ready to do everything they can to help him prevail. In the meantime, he believes now is the time to make one of his longtime dreams come true and create an enduring legacy for the day he is eventually no longer here.
Shane turned to his Development colleagues to create a planned gift—a gift made possible through his life insurance, savings and other channels—that will be given to Cincinnati Children’s upon his passing.
Typically, gifts are designated to specific research projects, clinical programs or to a part of the hospital the donor is passionate about. Drawing on his decades of experience as a patient, Shane knew exactly what he wanted to do with his gift. And he knew just the four-legged friend who could help.
Doggie’s Friends
When Shane was just 6 months old, his aunt gave him a stuffed animal—a soft, cuddly, white and brown toy puppy. The stuffed animal quickly became known as “Doggie” and snuggled right into the role of best friend and comforter-in-chief—regularly accompanying him on surgeries and hospital stays.
“What can be hard for people who don’t have my condition or other similarly severe conditions to understand is these conditions try to break you every single day of your life. The pain, the trauma, the knowledge that you’ll never have a normal life, it’s too much for anyone, much less a young child.”
Doggie was always Shane's companion, in hard times and good times, in the hospital and on adventures.
But a friend, Shane says, one you can really count on, makes all the difference.
“Doggie gave me the love, comfort, and emotional strength I needed to overcome that. When I hold Doggie, I know everything is okay even if, especially if, nothing is okay.”
Doggie still goes into every surgery with Shane. These days the pup is showing his age. He’s a bit tattered, patched up and on the mend, but so is his lifelong companion.
“Both of us are showing wear and tear,” he explains. “But Doggie still gives me just as much love and comfort as he did when I was a child.”
Now it’s time, he says, to pay it forward.
“Kids who face what I’ve faced often feel like a normal childhood is beyond reach. But you have to be able to put aside all the medical stuff and just be a kid sometimes. That’s so important. That’s what Doggie gave me, and that’s what I want to give to others.”
A special video will share Shane’s story and introduce Doggie and his friends to patients receiving a new stuffed animal.
With his planned gift, Shane’s creating an endowed fund that will support a program he’s calling Doggie’s Friends. In partnership with our Child Life team, the program will gift a stuffed animal to patients with chronic, severe diseases who need multiple surgeries like Shane has over the years. The new friend will come with an animated video introducing Shane’s and Doggie’s story, plus online resources for families.
“When a child receives one of Doggie’s Friends, I hope they get as much comfort as Doggie gave me. I hope that in every smile, in every hug and cuddle with their new stuffed animal, a piece of Doggie and I live on.”
Full Circle
Shane hopes that his time with the Cincinnati Children's family, a unique journey that has placed him in the roles of patient, employee and now donor, inspires others to give back too.
“It’s a great feeling to know that I can help,” he says. “I can’t imagine a better way to help others.”
Throughout his life, Shane has become comfortable not knowing what tomorrow holds. But now, with a legacy plan in place, and the Doggie’s Friends project near completion, he knows whatever the future holds for him, he’s made tomorrow brighter for the kids and families we serve now and for generations to come.
“The only thing I care about right now as I’m dealing with cancer is bringing Doggie’s Friends to life. This will be my legacy,” he says.
Because the love of a family never ends.