Jack Skelly, 6, and his family attended Johns Hopkins' annual Bladder Exstrophy/Epispadias Picnic and Seminar, July 8-9.
On the Internet, the news was devastating. New Yorker Kara Skelly, whose infant son had just been diagnosed with bladder exstrophy, read story after story that “led us to believe he was doomed to a lifetime of incontinence, depression and low self-esteem,” she says. “Regardless of what Jack’s doctor said, I believed the other stories were fact.”
Three years and two failed surgeries later, the Skellys found a new doctor and a better source of information about the rare congenital disorder in which part of the bladder is outside the body. They took Jack to Hopkins Children’s pediatric urologist and surgeon John Gearhart, a noted expert in caring for exstrophy patients. “We were told that he was simply the best,” says Skelly.
In Gearhart and through conversations with his other patients and families, they found new hope and strength.
At Hopkins Children’s, to which the family traveled weekly from Albany for five months, they met older children with bladder exstrophy. “Seeing how well they were doing, we began to realize that not only was there hope for our son to have a normal life, but that there was no reason not to expect it,” Skelly says.
They also met families whose children were coping with different congenital and chronic illnesses. Inspired by their stories, Skelly and her husband Mike decided to compile them into a book, in which the newly diagnosed could find encouragement and support. They invite families to submit their stories to firstname.lastname@example.org.
“I don’t want others to suffer for months like we did, believing their child will never lead a normal life,” says Skelly. “The facts don’t tell the whole story and the stories on the Internet are typically the heartbreaking ones. I want parents to read the inspirational ones about children living with and fighting the same illness, disease or injury.”
The family is also developing a website of health information.“We want to give parents hearing devastating news the facts, as well as the fortitude to carry on, to know that even though a diagnosis can be serious or life-changing, they are not alone and that something wonderful can come out of it,” Skelly says.
Their new website, AmazingLittleWarriers.com, tells more of their own story. Over the summer, they will be adding “content about different illnesses, diseases and medical conditions.
“We want this to be a comprehensive resource for all parents of Amazing Little Warriors like ours,” says Skelly.