Amy Clark

WHY WE NEED A STRONG CIVIL JUSTICE SYSTEM

Amy’s Story:

My name is Amy Clark. My first son, Brandon, was born in 1997.  Shortly after he was born, I noticed he wasn’t meeting developmental milestones as he should. He couldn’t roll over and was showing severe developmental delays. As he got a bit older, he couldn’t speak and was excessively happy. He would laugh for extended periods of time without reason. He also had difficulty sleeping.

Trying to figure out what was wrong with my son, I went for counseling and genetic testing. Both Brandon and I went through multiple tests and it was determined that Brandon had Angelman Syndrome, a rare neuro-genetic disorder that occurs in one in 15,000 live births. Those who are affected by the disorder have developmental delay, lack of speech, suffer from seizures, have difficulty walking and balance disorders. I was told it was likely that Brandon would require life-long care. This was devastating news to me and our family.

We had no history of this disorder in our family. I was told that most cases of Angelman Syndrome are not typically inherited but occur because of a spontaneous genetic mutation. However, in some extremely rare cases the genetic mutation for Angelman Syndrome can be inherited. A geneticist told me that all of the tests done on Brandon showed his Angelman Syndrome was spontaneous and not hereditary. I was relieved, because this meant my husband and I could have more children and not have to worry about them having Angelman Syndrome.

I had always dreamed of having a large family.  However, because Brandon’s condition required so much of my time and attention, I wanted to be 100 percent positive that his condition was not hereditary before I even thought about having another child.  So I sought a second opinion from a second geneticist. That geneticist never ordered new laboratory testing for me or Brandon, and never sought out the original test results from the first geneticist.  Instead, the second geneticist assured me that the first geneticist had done all the tests available and said those tests were negative. She told me that I had a less than 1 percent chance of conceiving another child with Angelman Syndrome.  This was great news, and we planned on expanding our family.

In 2001 we welcomed our second son, Timothy, into the family. As he grew, I started to notice that Timothy was showing the same symptoms of Angelman Syndrome that Brandon had. He had jerky and unpredictable motor movements, he would laugh uncontrollably for long periods of time, he wasn’t learning to speak and he wouldn’t sleep. I began to panic and sought answers from my previous doctors, but I was getting nowhere. I demanded to see my original tests. I was told by the lab that my tests were not negative, that I indeed tested positive for the hereditary genetic mutation. This meant I had a 50 percent chance of having a child with Angelman Syndrome.

I was absolutely devastated. I trusted these doctors and they had given me false information all this time. Because of their mistakes, I now have two disabled children who demand 100 percent of my time and attention, 24/7.

Don’t get me wrong, I love my boys, but caring for them can be overwhelming. Neither one of them will ever live independently. They require constant care and supervision. A simple cold can turn into much worse, because my boys aren’t able to cough or even blow their noses. So a minor illness can easily turn into pneumonia and a stay in the hospital.

Simple dentist appointments are not that simple. I first have to find a dentist who can accommodate their wheelchairs. Then once I do that, I have to find a dentist who will work on severely disabled children. Those dentists are never close by, so they require a few hours in the car. A dentist appointment turns into several days and many trips because they often end up requiring a general anesthesia in the hospital just to obtain x-rays, then yet another hospital visit to get the work done. Of course all of this requires the typical pre-op physical and blood work and permission from the neurologist – all of which adds two to three more days to this process.

The civil justice system in Illinois allowed me to hold the doctors accountable for their mistakes. I cannot work, because it’s impossible to find someone to care for the boys. My life is not normal by any means, and my settlement did not place me in the lap of luxury. I needed my settlement to survive, to pay the bills and to put food on the table. Without it, my boys would now likely be in foster care or in a state institution, just so I could work to support my sons and my daughter. I didn’t win a jackpot—I obtained justice. Trust me, I’d give it all back to have that big, healthy family that I always wanted.