This article, After DNA Diagnosis: ‘Hello, 16p11.2. Are You Just Like Me?’ in Friday’s New York Times tells the stories of several families who have had genetic testing done that pinpoints their children’s exact chromosomal variations causing their children’s disabilities.

It’s exciting that technology now enables us to scan all 46 chromosomes through a simple (but expensive) blood test and identify the exact variation, additions or deletions to the DNA chain. These variations result in specific disorders, and the children who have them share specific symptoms and traits. In the past, the children have diagnosed with developmental disabilities, such as cerebral palsy, mental retardation or autism. But they haven’t quite “fit” the typical symptoms of their diagnosis.

Although the science behind being able to specifically pinpoint these children’s problem is incredible, there were two things I found more fascinating about this article.

First was how the parents, through the use of the Internet and their own tenacity and insistence of sharing information through their doctors, have found other families with the same disability. This finding of those going through the same experience is a universal need for parents of special kids. We are so blessed to live in this information age, where computers can help us eliminate geographic barriers. In the case of these rare genetic disorders, only a few hundred children in the entire world are known to have many of these disorders. But for these families to be able to meet, or to communicate if they can’t meet, is invaluable both to share information, and so they don’t feel so alone.

This is true about larger communities, like the adoption community or those who are parenting traumatized children, internationally adopted children…the list goes on.

The other thing I found fascinating, and incredibly sad, is how the two couples who were central to the story have both gone through a divorce. It’s not surprising, given the marriage failure rate statistics I cited last week. But it’s sad that for parents who obviously have so many challenges, the most important aspect of their life before they became parents…their marriage…doesn’t survive the ordeal. I have no words of wisdom along these line, except to say that sometimes being aware of the high probability of marital problems when parenting children with disabilities is enough to help. Making your marriage a priority is a must!

It is very difficult to have a child with a disability that no one knows exactly what to do about it. These families of children with these rare disorders are trailblazers. Whatever is done to and for their children is truly experimental, and no one can tell them the outcomes. So many questions…very few answers, even after the genetic variation has been found.

Check out this article, and all the attached videos and interviews.

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