Bronx siblings raise awareness on rare Moebius Syndrome

9 months ago 14

THE BRONX, N.Y. (PIX11) -- Luis Velazquez is a high-spirited seven-year-old who was born with a rare neurological condition known as Moebius Syndrome.

It affects cranial nerves, particularly those that control facial muscles and often impairs speech.

Though wedded to a wheelchair, Luis lives by the slogan on his tee shirt, "Doctors Said I Couldn't," and the reverse declared, "But God Said I Could."

"It's basically saying I did what the doctor said I couldn't," the young boy proudly said.

Luis hasn't let his condition hold him back. He's quite active and attends school every day.

"God helped me do it," he maintains, adding, "If you look different, you can still be normal."

On Moebius Syndrome Awareness Day, Luis highlighted the condition at St. Raymond Elementary School in the Bronx, where he's in the second grade. It was the idea of his sister Jayleen who made it her mission as part of her effort to earn the Gold Award, the highest honor in the Girl Scouts.

"I'm raising awareness and advocating for those with Moebius Syndrome because this nerve disorder is so rare, and people don't know what it is," according to Jayleen.

"Mobius is a neurological condition that makes it difficult to roll your eyes back, smile and squint your nose," Luis explained.

Luis, his sister, and his mom handed out Moebius awareness ribbons to teachers and other school staff and purple cupcakes to students. Purple is the signature color of the Moebius Syndrome Foundation.

Luis' condition is so rare that it surfaces only once in 50,000 births. He's only one of very few with the disability in New York State.

As part of the day's program, Luis read passages from a book about another child with similar disabilities.

"My mom says I'm unique. She says I'm a wonder. My dog Danny agrees," he read. "People don't see I'm a wonder. All they see is how different I look. We're all wonders."

His classmates give him a round of applause.

Lack of facial expression, the inability to smile or frown, is one of the common symptoms of Moebius Syndrome. But as Luis demonstrated so beautifully, people with his condition smile with their hearts, smile from within. It's something this little boy did so magnificently.

For more information on Moebius Syndrom and how to help you, click here.

Article From: pix11.com
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