NEW CASTLE —
Alex DiVitto is a walking encyclopedia when it comes to the subject of muscular dystrophy.
“Your body is like a puzzle,” Alex said matter-of-factly. “There are 72 pieces to the puzzle.
“I am missing two of those pieces,” he added. “Numbers 42 and 43.”
Alex is not a medical doctor. He is a precocious 9-year-old who knows way too much about the debilitating disease he battles on a daily basis.
And those two missing pieces — referred to as “exons” in the medical world — have changed the lives of Alex; his mother and father, Marla and Sam; and his sister, 7-year-old Samantha.
A NORMAL START
The DiVittos saw no signs of any abnormalities in Alex for several years after he was born.
“We noticed at around age 4 that he couldn’t run or jump like other kids his age,” Marla said. “We took him to a doctor, who said he was fine, that we worried too much.”
But when Marla saw that Alex struggled to climb the steps of the bus that was to take him to preschool, and later, when he fell on a sidewalk and could not get up when on a field trip while in kindergarten, Marla pressed the issue.
“I again took him to a doctor, who agreed that something was not right,” she said. “We were referred to an orthopedic specialist at Children’s Hospital in Pittsburgh. We were there 15 minutes when the doctor said, ‘You are in the wrong place, you need to be in the neurology department.’
“Sam and I looked at each other and said, ‘what does that mean?’ ”
Two weeks before Christmas 2009, the DiVittos received a phone call that delivered some devastating news — Alex had Becker muscular dystrophy, a disorder characterized by slowly progressive muscle weakness of the legs and pelvis. It causes a deficiency of the protein dystrophin in the body.