“Papa John’s cheese sticks or Applebee’s fries?” asks Theresa Liao of her son Nate.
“I want Applebee’s fries,” is the four-year-old’s quick reply.
Two-and-a-half years ago, he would have wanted neither.
Nate Liao is first person in the world to receive a stem cell transplant in an attempt to cure EB, a fatal genetic disease that affects the skin, both on the outside of the body and the inner lining of the digestive track. As a result, most kids with EB don’t like to eat—it simply hurts too much.
While he is still bandaged to protect his skin from damage, some of his wounds heal more quickly and the dressing changes take less time, Theresa says. “It doesn’t cause him as much pain or anxiety.”
The moment Sarah, the third child of Jay and Lonni Mooreland, was born it was evident that she was not a normal, healthy baby. She was missing skin on both of her legs, feet and both of her hands., Sarah had a very rare disease called Recessive Dystrophic Epidermolysis Bullosa (RDEB).
Sarah was off to a rough start with not only EB, but she also suffered additional complications not related to EB . After six weeks in the hospital the doctors were able to contain these complications through proper care and medicine. Sarah could now come home and begin her life with her family.
Hearing yourself clap. Most people take it for granted.
But Krista Boyd had to wait years to hear her son Keric clap. Before, with bandages wrapped around each of his fingers, his hands, his arms, his clapping was muted. The bandages protected his skin, which was fragile because of the skin disease EB.
“It’s a small thing that you take for granted,” Krista says.
Now, it’s been 18 months since Keric underwent an experimental bone marrow transplant in an attempt to cure EB. He can clap, and wrestle, and even jump on the trampoline with his brother and sister.
“He’s dressing-free on his arms,” says Krista. “It’s an amazing transformation.”
Rafaella Lily Kopelan was born one month after Dr. John Wagner did the first stem cell transplant for EB, a genetic skin disease that is eventually fatal.
And it didn’t take long after her birth for her parents Brett and Jackie to find out about it. With his self-described “bad Google habit,” Brett quickly immersed himself in EB research after his daughter, who they call Rafi, was diagnosed.
While she is the 8th child to go through the clinical trial, Rafi is also a first. On February 19th, she became the first to receive mesenchymal stem cells (a type of multi-potent cell) in addition to the umbilical cord transplant. Doctors are hoping that it will improve the outcomes and mitigate some complications.