Gustine teen with rare disease sees his wish come true

08/01/2014 7:10 PM

08/04/2014 1:14 PM

Garrett Spaulding couldn’t hide his smile Friday morning. The moment he’d been planning for years was finally here.

Spaulding, a 17-year-old boy from Gustine, was born with recessive dystrophic epidermolysis bullosa, or EB, a rare disease that causes blisters and tears on the skin, creating painful wounds. EB covers about 80 percent of Spaulding’s body, and because of complications and nerve damage, he can no longer walk.

But on Friday, Spaulding forgot all about the pain and focused on his excitement as the Make-A-Wish Central California chapter granted him the electronics shopping spree of his dreams.

Spaulding was picked up at his home by a limousine and was escorted through downtown Gustine and Newman by members of the cities’ police and fire departments. Crowds of supporters gathered in both downtown areas to cheer on Spaulding as he made his way to the Best Buy and GameStop stores in Modesto.

“I’m really excited,” Spaulding said before leaving his Gustine home Friday morning. “This whole week just seemed like it took forever.”

Spaulding’s wish list included an Apple Macbook Air, an iPad Mini, a PlayStation 4 and an iPhone 5S, among other electronics. He said the laptop and iPad Mini will help with the online college courses he plans on taking after high school.

He chose these specific models because of their light weight, which makes them easier to handle and avoids putting excessive pressure on his hands and legs. The game console will be used to play his favorite video games with friends, he said.

Spaulding said he had been saving up his wish until he was sure of what he wanted. “I felt like every five years I changed my wish,” he said. “But I wanted to make sure that what I ended up getting, I actually used.”

Spaulding is the youngest of five children and an incoming junior at Orestimba High School in Newman. His parents, Lorraine Montello and Jay Spaulding, accompanied their son on his shopping adventure.

“He’s been planning this since he was little kid,” his mom said. “There were too many options, but ultimately he wanted something that would give him long-term enjoyment.”

Spaulding, like any other teen with goals, wants to go to college. But because of his condition, his mother said, his options are limited.

Spaulding plans to study business to help out with his mom’s company. According to Montello, her son will be in charge of social media for Montello Fine Foods, the family’s newly launched oils and vinegar business.

“We really created this business for him, so that he’ll have something to do in the future,” Montello said. However, as a basketball fan, Spaulding’s dream job would be to work as a statistician in professional sports.

According to Make-A-Wish volunteers, Spaulding is one of the most severe EB patients out there. As the disease progresses, he has to be wrapped in gauze bandages from his neck to his toes for protection against skin breakage. His mom changes the bandages every few days. Without a cure, pain management is a high priority in the handling of EB.

Spaulding has been featured on the National Geographic show titled “Extraordinary Humans: Skin” and the video documentary “Garrett: The Boy Beneath the Bandages.”

“Garrett’s is one of those stories that just took off,” Cora Gonzales, a volunteer with the Make-A-Wish Foundation said. “All I did was make one phone call and next thing you know he’s receiving all this support from the community. It’s incredible.”

Gonzales hopes that Spaulding’s story will inspire other families in Merced County to reach out to the Make-A-Wish foundation, either to donate or to inquire whether their child is eligible for a wish.

“This is just a day where these children don’t have to think about their illnesses,” Gonzales said.

Make-A-Wish Central California chapter has granted more than 1,800 wishes and serves eight counties: Fresno, Madera, Merced, Mariposa, Kern, Kings, Tulare and Inyo. According to volunteers, they are working on granting six other wishes in Merced County. To contact the Central California chapter, call (559) 221-9474.

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