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 first time in his life. Since then, hes become progressively more verbal, more social, more active. Hes obsessed with sports. He posts team picks on Facebook.
Usrey-Roos says its as if a lid was taken off the box for the whole family. On May 15, the Outward Ingersoll camp seemed the latest entry on a wide-open calendar.
It was such an amazing time in our lives, says Usrey-Roos. It was the highest of highs and the lowest of lows, all in the same day.
Thats because May 15 was also the day the family learned the drug trial for Arbaclofen had ended. Starting June 1, anyone taking the medication would have to begin tapering off. That includes 200 to 300 families across the country and Parkers 10-year-old sister, Allison, who has milder FXS symptoms.
This was one of the first major trials to report out the results of their study for Fragile X syndrome, says NXFX President Robert Miller. This was a highly anticipated one. ... People were very hopeful.
Original post:
Autism treatment drug trial ending after showing promise