During a routine ultrasound, Amy and Jorge learned that their unborn child would have a number of complex issues.  Their doctor referred them to a perinatologist, who determined that the baby’s condition, although serious, wasn’t terminal.

A Rare Condition
Alex, now 6, was born with multiple pterygium syndrome, a rare genetic disorder that can affect facial features, stature, vertebrae and joints.  Webbing of the neck, elbows, knees, armpits or fingers characterizes the condition.  Amy recalls, “He had significant scoliosis, clubfoot and spina bifida.  One knee was contracted to 45 degrees, three fingers on his right hand were fused, and his left arm was fused to his torso.” 

A day after he was born, Alex had his first surgery.  “We had just learned about our baby’s condition, and then we sent him off for surgery.  It was heart-wrenching,” Amy says.  “Two days later was Sept. 11, 2001.  It was such a surreal time.”

A Real Trouper
Alex remained in the neonatal intensive care unit for more than seven weeks.  He spent most of his first year in casts.  Since then, he has had 25 surgeries, including many at Gillette Children’s Specialty Healthcare.

Alex has become adept at dealing with medical procedures.  “It’s what he’s always known,” says Amy.  “Sure, he gets nervous.  But he looks at things differently than other children do.”  She adds that the people at Gillette are great.  “They know — and care about — him. He sees each hospital visit as a chance to view a new movie or to get a toy,” she says.  “He knows he’s not alone.  He can push the nurse button and someone will be there to help — even if it’s just to get him a Popsicle.”

Alex is a well-adjusted, delightful little boy, Amy adds.  “He’s just like Norm on Cheers,” she says.  “Everyone knows his name.  Everyone’s a friend.”

Listen to Alex's Story Here

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