Parents heartbroken after experimental autism drug study canceled

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by Lucy Bustamante, 13News

WVEC.com

Posted on May 17, 2013 at 6:17 PM

Updated Friday, May 17 at 6:30 PM

NEWPORT NEWS -- Lori Armer was playing basketball with her 15-year-old son Friday in their Newport News backyard.  He high-fived her after he made a basket and shrieked in elation.

Until last October, Jonathan had never played basketball and Lori doubted he ever would.

Jonathan has a condition called Fragile X syndrome, which is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics.

Lori didn't get kisses from her son either and says she didn't know what Jonathan was thinking most of the time. 

But now, Jonathan welcomes people into his bedroom, where he shows off his Buzz Lighyear toys, introduces his pet bird Ringo, and talks about the dragon he likes to slay outside his house with his plastic sword. 

Lori says it wasn't until October that she found out her son had such a great imagination.

Last October, Jonathan enrolled in a clinical study for a drug named STX 209, created by Seaside Therapeutics Incorporated.

Jonathan hugs and kisses his mother now and proudly shouts "This is my mom!"  Lori says she never saw that until her son started taking STX 209. 

But these new behavior milestones could could come to an end within the month because the study had been canceled due to a lack of funding for Seaside Therapeutics.

The study manager responded to Lori in an email. 

"The closure of the study is due to resource limitations at Seaside Therapeutics and is not related to any known safety issue in patients," it read. 

Lori's heart sank and she got angry. Now, she's started a petition on change.org.

Lori pointed to framed artwork that has "mom" "dad" and "Jonathan" written on it and says, "When you're told your child will never read or write, but then you see that..."  She was told her son would never be able to draw or write names. 
 
Lori credits Jonathan's progress mostly to the drug but also to his teachers at the Denbigh High School Autism Program.

Lori hopes someone else will pick-up the drug or fund it.

"You would do everything possible too, if something gave you the son you knew you always had. This can't come to an end," said Lori.

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