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Posted: Monday, November 24, 2014

A little boy who makes huge efforts

Jesus Cornejo has a smile that will disarm you. Whatever you are thinking about – whatever troubles are on your mind – will almost instantly fade away when you see his grin. He smiles a lot, and his smile belies the fact that, at just 5 years old, he’s already been met with numerous challenges, many of which he’s still fighting to overcome.

Jesus was born with Prader-Willi syndrome, a rare congenital disease that affects, among other things, his mental and muscular abilities. As a baby, Jesus could not roll over, crawl or walk. He also couldn’t eat by mouth, and relied on a gastrostomy tube (g-tube) for feeding. It took Jesus a long time to learn to talk. He currently can say about 30 words that are understandable, and uses a combination of sign language and gestures for everything else.

“I’ve been through a lot with him,” his mother Elvia Cisneros said via a translator. “I can’t believe what he’s doing now.”

Since he was just a few months old, Jesus has been receiving various therapies at Blount Memorial’s Total Rehabilitation at Tellico West in Vonore. Therapists have helped him learn to eat solid foods and have taught him how to use a tablet-style device to communicate in full sentences. “The primary focus is on speech and language,” said speech language pathologist Cassie Marquis. “We’re going to keep working on his speech skills, but in the meantime, we’ve gotten him a communication device. With that, he can ask questions, answer questions and initiate communication with other people. Those are things he can’t do with his voice right now,” she explained. “I think he will be able to, but not right now.”

“Jesus wasn’t walking when he started preschool at age 3,” said physical therapist Lisa Steible. “We’ve been working with him in the pool, which eliminates gravity and the heaviness of lifting his body. He just loves the pool. He did start walking during that first preschool year because he saw all those other children walking, and he was just motivated to do that,” she said.

“Jesus wants to have every ability, and he wants to use them all. There’s never a day that he doesn’t want to use them,” Cisneros said.

The family’s translator, Lynne Warren Pierce, has been with working with them for almost two years. “This is a little boy who makes huge efforts,” Pierce said. “I remember the day Elvia asked the physical therapist ‘When will he be able to walk?’ Now, he’s not only walking, but he’s running. It’s a miracle, it really is.”

“Anything he’s asked to do, he does it happily and eagerly. There’s never a whine or an ‘I can’t,’” Cisneros said. “He was born that way. He’s always done things with a lot of pleasure and happiness. He doesn’t know he’s not like other children. I know he’s different, but he does not know that,” she said.

Cisneros has been with her son through virtually every single appointment – and there have been many. Over the years, Jesus has seen not only therapists, but eye doctors, neurologists, nutritionists, sleep specialists and dentists, just to name a few. All of this is further complicated by the fact that Cisneros doesn’t drive. She relies mostly on public transportation to get her where she needs to go, which often means long rides, long waits and lots of extra hours spent.

“I know that all the effort is worth it,” she said. “I don’t regret one minute of it.”

“It’s a family effort,” Pierce said. “Not all children have that much support.”

“He’s just an amazing little boy. He has motivation and the inner drive to push himself, and that’s backed up by his family,” said Steible. “He has that little spark,” she added.

Cisneros says she believes God will help her son throughout his life. “I would like him to be able to do things by himself,” she said. “Right now, he needs me, but I hope one day that he won’t need me to help him do things. Whatever he would want, I want him to have. I want him to have a normal life, whatever that would be for him,” she added.

As Jesus moves from learning how to use his communication device to undoubtedly much greater challenges in the future, the one constant, it seems, will be his smile.

“Jesus, with a smile, says everything,” Cisneros said. “He gets tired from lots of things, but he always makes an effort to go forward. He just smiles and goes on.”

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