There may be new hope for what some parents have called the most painful disease nobody has heard of and its victims are children.
And while we should tell you that it may be difficult to watch them in pain, researchers in the Bay Area believe they could soon have a way to help them.
Garrett Spaulding lives with pain. The 13-year-old has no choice but to be tough, because his skin is so fragile.
"It's pretty horrendous because the pain management is the trick," Garrett's mom Lorraine Spaulding said.
Garrett was born with a genetic skin condition most commonly referred to by its initials, E.B.
The slightest trauma can produce open wounds. His mom wraps and re-wraps the multi-layered bandages that protect him several times a day.
The same rare condition might have prevented Andrew Perez from ever holding his pirate sword.
His mother brought him to Lucile Packard Children's Hospital from Arizona for surgery because the skin on his fingers was beginning to fuse together.
"He can use his hands now," Andrew's mom Maria Hernandez said.
E.B. is so rare it affects only about one in 50,000 children and Lucile Packard has the only dedicated E.B. clinic in California. Doctor Anna Bruckner says the children often suffer from interconnected health issues that can cut short their lives.
"So in addition to the wound care, we try to look at other medical issues the kid could be having. We're checking for anemia, we're looking at their nutrition, we're trying to keep them as active as possible," she said.
Still, for decades the clinic's main mission has been to help the children manage the pain, because there is no known cure or treatment for E.B. -- but that could soon change.
Doctor Alfred Lane says his research team could soon be ready for clinical trials using advanced skin graft techniques. He says one of the most promising involves genetically engineered cells.
"That's the process of taking the gene which makes the protein that these patients are missing putting that gene in their cells, make the correct protein, then grafting to cells back onto the patient," Lane said.
In other words, replacing damaged sections of skin on patients like Garret with healthy tissue. And that goal received another boost this fall, when the California Institute for Regenerative Medicine awarded an $11 million grant that will allow Lane's team to research a similar grafting approach using stem cells.
"So there are so much new theraphy options and opportunities for this disease in the last three years, than there has been in the previous 100," he said.
If either strategy is successful, it would offer the first hope for what some parents have called the most painful disease few people have ever heard of.
"Oh my gosh, it would mean a whole new world for us. It would be the biggest true life miracle on earth for us dealing with E.B.," Spaulding said.
Lane is currently recruiting E.B. patients for a preliminary trial the goal is for a stem cell based therapy in the next four years.
Written and produced by Tim Didion.