melody.jpg
Melody Perez
(photo by Andy Loree) 

From the Grand Haven Tribune, February 2, 2008

At just 4 years old, Melody Perez has undergone more surgeries than most of us go through in a lifetime. Her first surgery came when she was only a day old. The Robinson Township girl wasn’t breathing correctly and doctors installed a trachea tube in her throat, which had been connected to an oxygen concentrator.

The tube was finally removed last October, and Melody’s 13th surgery is scheduled in April to close up the hole left by the tube.

Throughout her life, Melody has been unable to smile, talk or eat most foods due to Moebius Syndrome, a rare birth defect caused by the absence or underdeveloped cranial nerves that control eye movement and facial expression. This has left nearly all of her facial muscles paralyzed, including the muscles in her eyes; Melody can only move her eyes up and down and must move her head to look to the side.

In addition, Melody was born with a small jaw, club feet, and her thumb and index finger on her right hand grew together to form one finger — all of which have been surgically repaired.

“It’s pretty hard,” Melody’s mother, Heather Perez, said of not being able to see her daughter form a smile or a sentence. “But she’s learning sign language and it’s getting easier to communicate in time by her learning sign language.”

Melody holds up four fingers, all with red-polished fingernails, signaling that she is 4 years old.

“She makes faces at us,” Heather said with a laugh, demonstrating with her hands above her head like they were antlers. “We know inside she’s laughing and making fun of us.”

Heather is planning a three-day trip with Melody, one of her other two children and her boyfriend to learn more about Moebius. The eighth International Moebius Syndrome Conference, sponsored by the Moebius Syndrome Foundation, is being held in New Jersey in July.

Entire article is here.

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