NEWMAN – Twelve-year-old Garrett Spaulding is a nearly straight-A student, loves basketball in general and the Boston Celtics in particular, and enjoys taking on his older brother in video games.....many pursuits typical of a soon-to-be teen.

But for Garrett, “typical” pursuits come only with painful determination and perseverance as he deals each day with a rare, genetic disease which leaves skin fragile and vulnerable to burn-like blisters and wounds with the slightest friction. His exterior skin essentially lacks the connective tissue to hold it in place.

Because of the severity of the disease – Epidermolysis Bullosa, or EB – Garrett requires extensive bandaging over his body, a painstaking, grueling process which must be repeated every few days. EB presents a host of  internal complications as well, adding to the challenges of living with and trying to manage a disease few can fully comprehend.

Garrett is doing his best not to allow those obstacles to stand in his way, say parents Lorraine and Jay Spaulding.

“His attitude is great. He is still a happy-go-lucky kid,” said Lorraine. “He’s excited about basketball, and he’s self-driven in school. Overall, he’s hanging in there pretty well.”

The cruel disease was largely unknown when Garrett was diagnosed with EB as an infant. The Spauldings have since thrown themselves into learning as much about EB as they can, monitoring research efforts and working to raise public awareness of the disease.

Lorraine has gone to work at Stanford, where she is involved in speciality clinics, including an EB clinic. Clinic patients often require care from specialists in a variety of medical disciplines, she noted, and in her role she helps coordinate that care. Lorraine also provides support to other families with EB children. That support includes demonstrating the bandaging techniques which the Spauldings helped develop as they learned to care for Garrett.

The Spauldings have closely followed EB research and believe promising developments are on the horizon which may lead to an effective treatment for Garrett and other children afflicted with the disease.

The FDA recently granted approval for human trials of a possible EB treatment, Lorraine said.

“There is still a stumbling block (development of a mass production manufacturing process), but they have already overcome 90 percent of the potential obstacles,” Garrett’s mother said. “I think the window has been opened, and that this will move forward. We are very excited. A big hurdle has been cleared, and I see a glimmer of hope if all goes well.”

The initial trials will be conducted on adult patients, Lorraine said, which in itself poses a challenge because few EB patients survive to adulthood. But after trials have been conducted on five adults the research will shift to childhood patients. “I hope that Garrett will be one of the children treated. There is a good possibility that will be the case,” she reflected.

She indicated the trials will involve a grafting process.

“This disease involves so many internal issues as well, but if you can take care of the main problem with the external skin, those things are controllable to a degree,” Lorraine explained.

As the family waits and hopes that a treatment will emerge, Garrett endures the pain and restrictions imposed by the disease while pursuing interests common to many 12-year-olds.

He is a basketball fan, and a Boston Celtics fanatic.

“He will watch games over and over again, all the way back to Larry Bird,” his mother related. “He watches the entire NBA draft to see where different players are going and what their strengths are.”

Garrett has met many of the Celtic players, including Kevin Garnett.

A pet bird which literally flew into the family’s lives one day was named, aptly enough for a Celtic fan, Larry.

He also loves attending games of his older brother David, an eighth-grader, and sister Sarah, a senior, to cheer them on. Garrett was an assistant coach in the rec league basketball program last year, helping head coach Chuck Messer set up plays.

Garrett is a sixth-grader at Yolo Middle School, where special aide Terri Eddington is at his side.

She has been helping the family with Garrett since he was an infant, and has been his assigned aide since Garrett started school.

“The school has been very accommodating. Overall, the school system has been one of the easiest entities to work with from the start,” Lorraine said.

His fellow students have always treated Garrett well, she added.

A wheelchair donated by Sharon Schmidt and her family has been a blessing, Lorraine added, allowing the family to keep one chair at home and another at school.

That is typical of the community support for the family.

“This community has embraced Garrett. There has been so much caring. It is so heart-warming,” Lorraine said gratefully.

Garrett’s story has captured attention well beyond the West Side.

A national television network will share Garrett’s story as part of an upcoming documentary.

The Spauldings also allowed photographer Andre Hermann into their life for more than a year to chronicle the life of a child and family facing a debilitating disease. Hermann is a student at the Academy of Art University in San Francisco; Garrett was the subject of the photographer’s thesis project, entitled “Garrett: The Boy Beneath the Bandages.” Several of his images are featured on page B5.

Garrett’s struggles with the disease continue.

While he has shown improvement from a particularly difficult year, Lorraine explained, Garrett has extensive wound mass and a profound amount of skin breakdown – although some chronic problem areas are generating good skin.

The bandages remain a constant in Garrett’s life.

“We are up to every other day on the bandaging, and we had been doing the bandages every third day, sometimes even every fourth day,” Lorraine commented.

The process takes three and a half hours at best; at other times can extend to five hours.

“I don’t think people can grasp how life-controlling it is. Everything revolves around when the next bandage change is, and what activities he can do,” Lorraine reflected. “The other frustration for us is just the pain factor....the days when he is hurting so badly and there is nothing we can do. Watching him go through the daily grind and not being able to be a regular, happy kid doing everything kids do is hard.”

Through it all, the family holds out hope for a treatment.

“I have always said that this will be a blessed generation. I believe that, with the way things are going, we will be able to witness a modern day miracle and they will get a cure,” she shared. “I believe it will happen before it is too late for Garrett. I have to.”