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Autism story hits close to home for ddn reporter
The discoveries, technologies and advances involved in the deals our editors and reporters write about each month sometimes hit very close to home.
Such was the case this month for Lori Lesko, who brings us a story about Melior Discovery's partnership with the Rett Syndrome Research Trust to screen drug candidates in an in vivo model 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 intimately familiar. In 1999, Lori married Mike Lesko, who is also a journalist in Northeast Ohio. Inspired by their work on a series of stories about local couples that adopted children from other countries, Lori and Mike decided to venture into an international adoption of their own. After viewing a videotape of Marius, a charming, 22-month-old Romanian infant, the couple headed to a Bucharest orphanage to meet the child they would rename and raise as Michael in their Bedford, Ohio, home.
But soon after their arrival, the Leskos realized that Michael 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 months old, he had not spokenónot even baby talk," Lori says. "We knew something was wrong because he would race around the room and not look at us, but we put that down 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 make the proper sustained eye contact that would allow him to even mimic baby sounds, much less speak."
Michael would later be diagnosed with Pervasive Development Disorder (PDD), a developmental condition on the autism spectrum, and the Leskos eventually learned from an international adoption expert that infants who live in orphanages often have similar challenges because the lack of interaction or touch in overcrowded orphanages causes brain synapses to remain dormant.
"This means a child does not talk (no one to mimic); the child cannot stand to be touched; the child will slap, pinch, etc., if you get too close to his face; the child will rock back and forth or stare at his hands, refusing to make eye contact," Lori explains. "Michael's doctors and teachers have been supportive, but his doctors reiterate that Michael's first and primary diagnosis is organic brain damageónot from being dropped or abused, but from the failure of relating to a human as a baby. To make a long story short, 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 is genetic."
As Lori continues to search for those answers, she set out this month to discover more about the work the Rett Syndrome Trust is doing for autism patients.
"I now see more opportunities in terms of clinical trials and different therapies to keep a child focused," Lesko says. "But by the time the FDA approves something, Michael will already be in his teens. The problem is, the general public, and parents of autistic children, seem to want to try all kinds of things, like diet and drugs. But nothing really attacks the brain in a way that would 'cure' autism."
Not yet, anyway. Let's hope the best chapter is yet to come in young Michael's compelling story.