"She was on morphine for the first month of her life to deal with the pain," Wilkes said. "We do dressings every day, treating blisters and putting ointments on. She has salt baths and bleach put in her bath every morning to prevent infections."

Last week, a simple cold was a setback. She began to wipe her nose and mouth, causing the skin to wear away.

Even just the act of standing can lead to blisters on her feet.  She can't walk yet, but has defied doctors who said she would never crawl.