By Jim Young
1 in 88
Those are the odds that a child in the United States is born with Autism or a related disorder, according to the latest estimate from the U.S. Centers for Disease Control and Prevention; and Fragile X is the most common known genetic cause of autism.
Both of Holly Roos’ children have Fragile X. Parker is an energetic and expressive 12 year old; and Allison, though possessing the same amount of youthful playfulness, displays much milder symptoms than her older brother. They play together like most brothers and sisters, enjoy the same cartoons on television, and even play the drums and video games together. Both are enrolled in a clinical trial of a drug to help treat Fragile X.
I introduced myself and right away Allison wanted to show me her room. It was pink and purple, with toys and princesses everywhere, much like many 9 year old girls. Parker was curious at first but soon just went about his routine. After Parker went to bed, I stayed up with Holly for a few more hours just to talk and learn about their story and where they are now. As a child, Parker started out developing normally but slowed when it came to his speech development. He has been on the clinical trial drug STX209 since he was 10.
Holly says it has given them all a life and let Parker out of a “box”. Before he joined the trial, he barely spoke. She told me that a couple of weeks into the trial drug, she had not see any noticeable changes until one day Parker broke a glass and said to her, “I am sorry Mom, I love you”. She cried because it was the first time she had heard those words from her son.
I spent the whole next day with them since they were home from school on break, and it was a non-stop day of activities. Coloring Easter eggs, biking, two trips to the tennis courts, basketball, a trip to the video store, playing on a trampoline…They have a very active life.