ABCNews.com readers did not disappoint us when we asked them to send us photos and stories about their personal heroes of 2011. But of the many heroes nominated, two in particular stood out: Courtney Roth and her 2-year-old son Tripp. We received dozens of requests asking us to be sure to feature the pair, whose story is heartbreaking and yet, judging from the many messages we received, also inspiring.
As Louisiana mom Courtney Roth writes in her blog, ” ‘EB’ing a Mommy,” when she gave birth to Tripp in 2009, he came out with a big blister on his head and slightly deformed fingernails, but still he “was just beautiful… just perfect.” (See early photos of Tripp here.)
Soon doctors delivered shocking news: Tripp had epidermolysis bullosa, a rare, disfiguring genetic disorder often associated with prolific blistering. He was later given a more specific diagnosis: Junctional epidermolysis bullosa, a severe form of the disease — so severe that a dermatologist told Roth that her son likely wouldn’t live to be a year old.
Under Roth’s tireless care, Tripp defied the odds but not without agony for both him and his family. His health deteriorated as he got older. In addition to the sores that began to cover much of his body, he had to be fitted with a gastronomy tube and then a tracheotomy tube. He endured multiple eye surgeries. Despite the surgeries, Tripp still lost his sight after multiple corneal abrasions and tissue growth that ultimately fused his eyelids shut. He is constantly on pain medication.
In a recent blog post, Roth said she wouldn’t sugarcoat what her son now endures.
“His days consist of going from the bed, to the rocking chair, then back to bed. No standing up to play. We are lucky and happy to get him to smile or even want his music on in the rocker now. He’s miserable,” she said.
“I don’t know how much more he can take. Seriously, I don’t know how he has the strength to wake up in the morning. But I’m sure thankful and so blessed each day that he does. He is my HERO,” Roth said.
For many, Roth herself is a hero for her dedication to her son.
“His mother never fails him and is always there for him no matter what the day brings to her. She has taught me to have more patience, to have more love and to have more compassion,” reader Peg Borderlon wrote in a message to ABCNews.com. “Tripp was sent to Courtney because God knew he would need a very special mom to take care of him and she is not only his mom, but she is his angel and she champions all his causes. Because of these two incredible human beings, my life and the lives of all they have touched will never be the same again.”
To learn how you can help those suffering from epidermolysis bullosa, visit The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA).