Local family opens the door on little-known syndrome - 13 WTHR Indianapolis

Local family opens the door on little-known syndrome

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INDIANAPOLIS - It took time, even years of processing, but now Indiana Congressman Todd Rokita is ready to pull the back curtain on a private challenge facing his family.

His first born son Teddy is a happy, affectionate 6-year-old with Angelman's Syndrome. It's a rare a neurogenetic disorder which impacts 1 in 15,000 births. Patients will require life-long care.

Rokita's wife, Kathy, remembers learning about the diagnosis when she was nine months pregnant with their second son, Ryan.

"It was was devastating. That was maybe the worst night of my life because as soon as I saw it, I knew that that was what he had. [Todd] was in the middle of this congressional race," Kathy said.

The timing seemed terrible. "Here I am running in a 13-person primary with a couple of them running negative ads, and all of a sudden we get this diagnosis. So, I just had to immediately go into a mode where we just put it all inside and ran the race and did the job, so in a lot of respects I'm still unpacking," said Rokita.

Rokita said talking publicly about Teddy now is a coming out of sorts for him. He's long since adjusted the mental hopes and dreams list formed when Teddy was born.

"A severe neurogenetic disorder where you are going to have the intellectual capacity, they say, of a 2-year-old isn't on that list," Rokita said.

Kathy said it was hard to process that Teddy wasn't going to grow out of what she, at first, suspected were routine developmental delays.

"It's not planned and so it's stressful sometimes, but I think in a lot of other ways it's brought us closer together," Todd said of their marriage. They will celebrate their nine year anniversary May 14.

For Teddy, they focus on early intervention with ABA Therapy at Little Star in Carmel. Teddy also has autism. He spends his days working toward functional goals. He is learning to swipe an iPad with the idea a communication app could reveal Teddy's true potential.

"The tough thing is we don't really know how much he knows or how much he doesn't know because we don't have the ability test him well. Not being able to communicate is difficult," Kathy said.

"He doesn't know what season it is or what day of the week it is or anything like that, but he's able to communicate his needs and his love to us and to his teachers," Rokita said.

Teddy does communicate his needs like "eat" and "go." He's walking, jumping and sitting when the prediction was he wouldn't.

"He's the light of my life. He is just this amazing kid who lights up a room when he comes in. He doesn't know a stranger. He has hug for everybody. He's this amazing little being, and now I can't imagine him being any other way," Kathy said.

"We consider Teddy a gift from God and we measure our accomplishments and our victories on a different scale, but they are very much there," Rokita said.

"Don't feel sorry for us; Don't feel sorry for Teddy - he's amazing," Kathy said.

As part of their effort to get the word out about Angelman Syndrome and raise money for research, the Rokitas have agreed to host the Angelman's Syndrome Foundation's first walk in Indiana.

The new family fun walk will take place on Saturday, May 17 at Carmel's West Park at 2700 West 116th Street. On-site registration opens at 8:00 a.m. The walk begins at 9:00 a.m. You can also register and/or donate online.

Proceeds of the walk fund education and research into therapies and treatments for AS.
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