Boy with Parry-Romberg Syndrome In Desperate Need of Help, Insurance Denies Surgery

July 7, 2013

Diego Melendez feels like a normal third-grader.  He has a younger sister who he plays with everyday, and his favorite subject is math.

“Because I am good at it!” he tells us.

Diego, 9, has Parry-Romberg Syndrome, a rare disease that causes tissues beneath the skin to shrink and degenerate. His parents had no idea he had the disease, until he was two years old.

They noticed a red dot on his face and took him to the doctor.   The redness expanded, and then the left side of his face slowly began to sink.  The family decided to leave their native Puerto Rico and move to Florida.

A surgeon in Wisconsin has said he can stop the progression with a series of facial surgeries, but their insurance provider denied Diego’s surgery.

Orlando City Commissioner Pete Clarke’s office is asking Diego’s insurance reconsider, and are doing what they can to help raise funds.

“The governor’s office has assigned someone to help with Diego’s case and maybe through Medicaid or forward kids care to see what they can do and maybe we can assist him,” said Commissioner Clarke.

“I have faith that we are going to do it,” Diego says.  “We are going to make that our goal!”

And he’s not bothered by cruel jokes or ruthless chants.

“No, not really, because like it doesn’t matter what they say,” he adds.  “It is not what they say, it is what I think of myself.”

Commissioner Clarke’s office tells us Diego is in a Wisconsin hospital right now. Next week, he will undergo the first of a handful of surgeries. To find out more about his progress or to donate to the foundation, visit the family’s website.

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