• Meet Alex

    During a routine ultrasound, Amy and Jorge learned that their unborn child would have a number of complex issues. Alex was born with multiple pterygium syndrome, a rare genetic disorder that can affect facial features, stature, vertebrae, joints and internal organs. Webbing of the neck, elbows, knees, armpits or fingers characterizes the condition.

    Amy recalls, “He had severe scoliosis, clubfoot in his left foot, and spina bifida.” Alex’s right foot had congenital vertical talus (CVT), a rare deformity that results in a rigidly-flat foot.

  •  

    “One knee was contracted to 45 degrees, three fingers on his right hand were fused, and his left arm was fused to his torso,” adds Amy. “And because his stomach didn’t close properly in-utero, he was born with his liver and intestines outside his body.”

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

  •  

    Alex spent most of his first year in casts. Since then, he’s had more than 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 knows he’s not alone. He sees each hospital visit as a chance to play with all the buttons on his bed – and to eat as many Popsicles as he wants.”

  •  

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

    At Gillette, Alex receives the specialized care he needs to remain a healthy — and happy — little boy.