Fallyn McNamara is enjoying her time as a new Daisy Scout and kindergartener as best as she can. But playing with her sisters, working on craft projects, and other seemingly ordinary activities are often difficult for this 5-year-old girl.
Every aspect of Fallyn’s life is affected by recessive dystrophic epidermolysis bullosa, or EB. It is a genetic disease that is considered to be incurable. But adult stem cells could be the answer as research continues to make headway for a variety of conditions.
Her skin can be wounded, and take days and even weeks to heal itself, from just the slightest pressure: the tag on her t-shirt rubbing against her neck is enough to cause injury. Chronic and painful blistering of the skin characterizes EB.
The factors confine Fallyn to a wheelchair. She doesn’t walk due to concerns about blistering on her feet from carrying her weight. She doesn’t have the stamina to walk far anyway, but can a little bit if she has to.
“Her legs are more of a problem area than the rest of her body,” said her father, Frank McNamara, a school bus driver.
Her meals are consumed using a gastro-intestinal tube.
“Her mouth is small,” McNamara explained. “She doesn’t have any cheek pockets anymore. She has a short tongue. Dental hygiene is an extreme issue.”
Many individuals with EB have to deal with a problem that affects the hands: when blistered skin began to heal, Fallyn’s fingers join together and become