Congressman, wife speak publicly about son's disorder

Pair raising money for Angelman syndrome

INDIANAPOLIS - Once in every 15,000 births, an angel is born. Angel is the term given to those who are born with Angelman syndrome, a genetic disorder that sometimes gets mistaken for autism.

U.S. Rep. Todd Rokita and his wife, Kathy, recently opened up about their angel, 6-year-old Teddy.

Teddy is non-verbal, which is common for those with Angelman syndrome.

"Some of the things that we're really working hard on in his ability to communicate. So he's non-verbal, he doesn't speak, and we are working on developing his skills at using an iPad," Kathy said.

Teddy was 2 years old when the congressman and his wife were finally able to put a name to their son’s condition.

Those with the disorder can also experience hyperactivity, seizures as well as other issues.

"Very often it's misdiagnosed as cerebral palsy, it looks real similar to that sometimes, or autism, or just not diagnosed at all," Kathy said.

Teddy can walk and easily get around, but some angels can’t. He has the mental capacity of a toddler, and although intense therapy might improve that in coming years, the odds aren’t in his favor.

"Our Teddy and those like him are amazing gifts from God and that's how we accept Teddy," Rep. Rokita said.

There are many other things he might never do, but the Rokitas aren’t going to stand by without fighting for their son.

Kathy is putting together the first-ever Angleman Syndrome Foundation walk in Indiana. Money raised will go toward research.

"The research is critical, and it's going on right now and we need money to fund those scientists who are out there doing it," Kathy said said.

"Our hope and dream for Teddy and everyone with Angelman's is that we're going to find a cure," Rep. Rokita said.

The first Angelman Syndrome Foundation walk in Indiana is set for May 17 at West Park in Carmel. Click here for more information -- http://www.angelman.org/

Follow Todd Connor on Twitter: @toddconnor6 | Facebook: ToddConnorNews

Print this article Back to Top