The discoveries, technologies and advances involved in thedeals our editors and reporters write about each month sometimes hit very closeto home.
Such was the case this month for Lori Lesko, who brings us a storyabout Melior Discovery's partnership with the Rett Syndrome Research Trust toscreen drug candidates in an in vivomodel of Rett Syndrome, the most physically disabling of the autism spectrum disorders(see "Allies against autism").
Autism is a condition with which Lori has become intimatelyfamiliar. In 1999, Lori married Mike Lesko, who is also a journalist inNortheast Ohio. Inspired by their work on a series of stories about localcouples that adopted children from other countries, Lori and Mike decided toventure into an international adoption of their own. After viewing a videotapeof Marius, a charming, 22-month-old Romanian infant, the couple headed to aBucharest orphanage to meet the child they would rename and raise as Michael intheir Bedford, Ohio, home.
But soon after their arrival, the Leskos realized thatMichael was not the same active, mischievous child they saw in the video.
"The video had no sound, so we didn't know that at 22 monthsold, he had not spoken—not even baby talk," Lori says. "We knew something waswrong because he would race around the room and not look at us, but we put thatdown to fright. He understood Romanian, so we figured he would learn English.He learned English within six months at home with us, but still did not makethe proper sustained eye contact that would allow him to even mimic babysounds, much less speak."
Michael would later be diagnosed with Pervasive DevelopmentDisorder (PDD), a developmental condition on the autism spectrum, and theLeskos eventually learned from an international adoption expert that infantswho live in orphanages often have similar challenges because the lack ofinteraction or touch in overcrowded orphanages causes brain synapses to remaindormant.
"This means a child does not talk (no one to mimic); thechild cannot stand to be touched; the child will slap, pinch, etc., if you gettoo close to his face; the child will rock back and forth or stare at hishands, refusing to make eye contact," Lori explains. "Michael's doctors andteachers have been supportive, but his doctors reiterate that Michael's firstand primary diagnosis is organic brain damage—not from being dropped or abused,but from the failure of relating to a human as a baby. To make a long storyshort, autism is the diagnosis used because he exhibits signs of autism.However, I don't think, and have no way of knowing, whether his condition isgenetic."
As Lori continues to search for those answers, she set outthis month to discover more about the work the Rett Syndrome Trust is doing forautism patients.
"I now see more opportunities in terms of clinical trialsand different therapies to keep a child focused," Lesko says. "But by the timethe FDA approves something, Michael will already be in his teens. The problemis, the general public, and parents of autistic children, seem to want to tryall kinds of things, like diet and drugs. But nothing really attacks the brainin a way that would 'cure' autism."
Not yet, anyway. Let's hope the best chapter is yet to comein young Michael's compelling story.
