The following article appeared on the front page of the June 2, 2007 edition of the Chicago Tribune:
Heartbroken, But Not Beaten
Even using walkers, their twin boys could no longer make it to the park at the end of the block. Bob and Sonya Evanosky knew something was seriously wrong, something that couldn't be explained by the cerebral palsy diagnosis the previous year.
They were right: In December 2004, they learned that John and Christopher, then just 3, did not have cerebral palsy but suffered from a genetic disease that strikes just one in 40,000 people.
There is no cure for metachromatic leukodystrophy, although there are signs that an early stem-cell transplant can stay some of its devastating effects.
But by the time the symptoms are apparent, as they were with John and Christopher, it is too late. An early death -- most children don't live past 5 years -- is certain.
"The doctors told us, 'take your kids home, make them comfortable, there's nothing we can do,'" said Sonya Evanosky, 37, of Aurora.
The following article appeared in the June 14, 2007, issue of Fox Valley Villages, a local Aurora, IL newspaper. We also know Mary Schneider, the other parent mentioned in the article.
One of the perks of writing this column is meeting heroic people. Two of those people are Bob and Sonya Evanosky. About a year ago, I wrote about their struggles with their three children who all have a rare genetic disease. Their two oldest sons, identical twins who are five years old, were diagnosed with metachromatic leukodystrophy at age three. The disease was too advanced to treat so the parents have had to watch the boys slowly lose control of their bodies. Click here for the remainder of the article.