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The Diaz family of Poland will be spending a lot of time in and out of hospitals over the next few years because their youngest son, 11-month old Jackson Diaz, was born with an extremely rare medical disorder.
Eleven months ago, the fourth bundle of joy arrived for the Diaz family, and it became clear very early to doctors that something wasn’t quite right.
“They had no idea. They had never seen it before, so you can’t diagnose something you’ve never seen,” said Melanie Diaz.
After two days, doctors diagnosed Jackson with a rare genetic mutation called Apert’s Syndrome. It affects between 20 and 25 kids a year in the United States, about 1 in every 200,000 births.
The syndrome causes deformities to the hands, feet, face and skull. Jackson’s hands are fused together as are the bones in his skull. Jackson has to see specialists in Boston and Philadelphia.
Jackson had his first surgery in February and his parents said he still has three more to go this year, noting he will probably undergo more than 20 surgeries in his lifetime.
The first was designed to expand the fused skull to give Jackson’s brain room to grow.
“They put a device in there, similar to braces with a pallet expander,” Diaz said.
He also will have work on his hands. His specialist in Boston said Apert’s Syndrome hand deformities are in three classes.
“One being the simplest and three being the most complicated. And Jackson has type-three hands,” said Dr. Joseph Upton.
Jackson will have multiple hand surgeries to separate and reconstruct his hands.
“By the time he’s a year to 18 months of age, we want to have all fingers and the thumb out,” John Diaz said.
Eventually, he also will have multiple facial reconstruction surgeries. The family will have a benefit and awareness dinner at St. Charles in Boardman on June 9. For more information, click here.