My daughter Noel has a rare neuro-genetic disorder called Angelman Syndrome. It affects every part of her life, and she can not be left alone for even one second. When you are a parent of a child with this type of disability, you will find that you are going to be faced with the decision of allowing your child to participate in a clinical trial.

My daughter was eligible for two studies last year. I elected to sign her up for the Angelman Syndrome Natural History study because it didn’t require giving her any drugs. It was simply a study that would take place once per year each year for a total of five years. The study is done in Boston, just outside of where my relatives live. This study gives me a chance to spend time with my family so it seemed like a win win situation. I declined signing my daughter up for the drug study, however. I just couldn’t bring myself to give her another drug on top of what she has to take for her seizures.

Becoming a parent means having to make a lot of tough decisions. My youngest child is completely disabled so there was no option but for her to attend my local special services school so that she could receive therapy on a daily basis. My oldest daughter, however, is the exact opposite. I began teaching her from the time she could point. When it came time for her to begin her school years, I made the decision to homeschool.