New Castle News
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.
Although the mother often is a carrier, tests showed that Marla is not. In fact, no one in the family, including Samantha, tested positive. While both sexes can carry the mutation, females rarely exhibit signs of the disease.
“We were told it was just a freak thing with Alex,” Marla said. “It just happened.”
The good news, if there were any, was that of the two types of muscular dystrophy — Becker and Duchenne — Becker is less severe.
Alex is on a regimen of steroids and twice-weekly physical therapy. Still, the long-term prognosis is not good.
“Right now, with the steroids, he is still able to walk and run, but eventually he will be wheelchair-bound,” Marla said. “It’s hard to believe when you look at him, because he is still so active.”
Before that happens, though, Alex bravely has agreed to participate in a trial at Children’s Hospital in the fall, when a piece of muscle will be taken from his arm to use in a study of protein retention and exon skipping in muscular dystrophy patients.
The surgery could be painful, but Alex says he is prepared to endure it.
“He wants to help find a cure,” Marla said. “He will do whatever it takes.
“My little boy is very brave.”
About that, there is no question.
“It is probably going to hurt, but I’ll be OK,” Alex said. “I would like to help other kids.”
A WISH GRANTED
That bravery was rewarded by the Pittsburgh chapter of the Make-a-Wish Foundation, which granted hiswish to go on a Disney Cruise with his family.
The DiVittos went to Disney World in Orlando three years ago, and ever since, Alex has talked about going on a Disney Cruise and seeing a dolphin.
He was given a choice of several vacations or cruises he could take through Make-a-Wish, but when he found out he could not only see a dolphin, but swim with one, his mind was made up.
“Swimming is one thing he is still able to do, in fact most of his physical therapy involves swimming,” Marla said. “Unfortunately, the more active he is, the more pain he is in, but swimming seems to be the one exception to that.
“He also found out there would be fireworks on the ship and that sealed the deal for sure,” she added. “He loves fireworks.”
In mid-July, the DiVittos set out on a five-day cruise to the Bahamas. There, they visited Pelican Plunge, an ocean playground at Disney’s private Island of Castaway Cay, along with the Discover Atlantis aquarium in Nassau, where Alex was able swim with a dolphin in Dolphin Cove.
Alex was assigned his own dolphin, named Tamara.
“She was so soft,” he said. “She felt like silk. It was just such a great day, I never wanted to leave there.”
Tamara actually finished in a tie as Alex’s favorite memory of the cruise.
“They had chocolate chip cookies on the ship that were as big as my head,” he said. “They were sooooo good. I ate 20 of them.”
When Marla protested, he said, “OK, I ate eight, but I could have eaten 20.”
THE HERE AND NOW
This week, Alex attended MDA camp at Camp Kon-o-Kwee in Fombell.
“He gets to see other kids who are like him,” Marla said. “In fact, a lot of them are worse off and he feels bad for them.”
Alex also is preparing for his fourth-grade year at Union Elementary School, where he is a straight-A student.
“Our bus driver has been wonderful and the school has been very accommodating when he has to go to therapy or doctor’s appointments — they never give us a hard time,” she said. “He loves school. His mind is good. It’s his body that is letting him down.
“For now, he can still run and play and we are grateful for that. He is like the Energizer bunny. He definitely doesn’t act like a kid who’s sick. He’s determined not to let this get him down.”
Sam, formerly the equipment manager at Shenango High, is now the athletic equipment manager at Westminster College. Although Marla always has been a stay-at-home mom, she will take advantage of a family discount at Westminster to pursue a degree in early childhood education beginning this fall.
The DiVittos’ home on a quiet, shady street not far from Union High and Elementary schools has been for sale for quite some time.
“We love it here and really don’t want to move,” Marla said. “But this house just is not equipped for a wheelchair. We have to be prepared for when that time comes. Both kids sleep together in one room now and that has to change. We would love to make our current home handicapped-accessible, but we just can’t afford to do that with all the medical expenses we have.”
Marla and Sam are remarkably upbeat in light of an uncertain future.
“It’s been tough, but you have to cope,” Sam said. “We take one day at a time. We have each other and we get through things together.”
“My mother always says that God knows who to give these kids to,” she said. “We are Alex’s parents for a reason.
“God has been good to us,” Marla added as Sam nodded in agreement. “We will deal with whatever the future holds.”