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Savana Jenkins has a smile that lights up her entire face - so much so that her nickname at school is Smiley - and a loving nature that goes along with it. And her smile couldn't have gotten any bigger than it did during a recent trip to the Walt Disney World Resort with Ace & TJ's Grin Kids.
Savana, 11, was born with Angelman Syndrome (AS). It is a syndrome that is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Angelman Syndrome (AS) occurs in one in 15,000 live births, and is a rare neuro-genetic disorder.
"We didn't notice anything for months and months," said Savana's mom, Erin Jenkins. "At first tests said it was cerebral palsy, but her school therapists thought it was Angelman Syndrome. Once we got to the right doctor, they could tell us by sight."
The family was told that Savana would "be nothing," Erin explained.
"That wasn't good enough for me, and it still isn't," she said. "We were told she wouldn't walk, and she's up and running. We have her throwing a ball."
Savana is non-verbal, but it was evident to her family how happy she was during the Grin Kids trip.
Grin Kids is a non-profit charity created by Charlotte radio personalities Ace and TJ of the Ace & TJ Show. The charity was created in 1999, and each year the organization provides a family vacation to Disney World to children who are terminally ill or chronically disabled.
Children are nominated by friends or family, and are selected by a collaboration of pediatric doctors and nurses and their medical teams.
"When I first got the call she'd been selected, I didn't recognize the number so I didn't answer," Erin said. "When I got the message, I squalled. I couldn't even talk.
"We had listened to the show for years, even before Savana came along."
The all-expenses paid trip was one of a lifetime for Savana and her family, including younger brother Cole, who enjoyed the trip as well.
"They pay for everything," Erin said. "As soon as we got to the airport there were people there to help, and when we got off the plane in Orlando, there were Disney buses waiting on us."
Savana's favorite character is Goofy, and she got the chance to meet him during a character breakfast. The group got to open each of theme park while they were there.
Being with other families who have children in similar situations was a blessing, Erin added.
"There was no one staring at us when Savana acted out," she said. "Everyone just pitched in and helped each other. We brought home friendships."
While Savana will need lifelong care, she's come a long way from where doctors expected her to be.
"Our plan is to have a home with a basement, and that will be her apartment," Erin said. "Savana doesn't know that she's different, and wants to be treated just like anyone else."
While she could question why Savana was born with Angelman Syndrome, Erin instead focuses on the blessing her daughter is.
"I've never looked at anyone with a disability any differently," she said. "I think that's why God gave her to me. God's made me stronger by having her."
For more information on Angelman Syndrome, visit angelman.org. For more on Grin Kids, visit grinkids.org.
