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.

A new clinical trial has become available for 24 children with my daughter’s condition. The drug has been in existence for a long time, and is one I even took in the past for an infection. I am choosing not to apply for this study as well. I’m not sure I want to give my child an antibiotic twice per day for life without knowing ahead of time that it definitely would improve her symptoms.

I do think that each parent must weight the risks and benefits out for their own personal situation. For example, if my daughter was having uncontrolled seizures, I would be more apt to join a drug trial. I’m hoping that a drug is eventually discovered that will improve my daughter’s quality of life, but until then I’ll just sit on the sidelines and follow the results from the ongoing trials.