Just a couple of weeks ago, getting ready to head to high school, Parker Roos took part in a three-day team-building event called Outward Ingersoll. He climbed ropes, ran, wore jeans. At the often-vexed and often-vexing age of 14, he was having a blast. Hes had such an amazing year, says his mother, Holly Usrey-Roos. Everything the other kids did, he did. It doesnt sound like a such big deal. Unless, like Parker, you have Fragile X Syndrome, or FXS. Unless, like Parker, your medication becomes unavailable at any price. The leading known genetic cause of autism, FXS can have a wide range of symptoms. Parker used to be nonverbal, but aggressive, and mostly made his wishes known by screaming. Usrey-Roos once wore long-sleeved shirts to cover her bruises and became an advocate/educator to help people understand. Shes held fundraisers, fought for treatment, testified before Congress, stayed up late nights emailing other FXS families as a liaison with the National Fragile X Foundation. It hasnt been easy, but it got easier when Parker was 10 years old. He entered a drug trial for a promising medication called Arbaclofen. Two weeks later, he told his mother he loved her for the … Continue reading
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