After dealing with her son’s diagnosis, Kathy Rokita organizes a local walk for Angelman Syndrome
By Adam Aasen
First-time parents are usually excited for their kids’ milestones. They anxiously wait for their first steps and their first words.
But for U.S. Rep Todd Rokita, R-Indianapolis, and his wife, Kathy, the emotion went from excitement to worry.
Their son Teddy was almost two years old, and he couldn’t even crawl. He had such little muscle mass that they saw doctor after doctor, trying to figure out what to do.
It turns out he has a rare neuro-genetic disorder called Angelman Syndrome, which is often misdiagnosed as autism. “Angels,” as they are colloquially called, are usually seriously developmentally disabled. They have seizures and require lifelong care.
Kathy Rokita was told by doctors that her son would never talk. Never feed himself. Never walk.
It appeared those first steps they were waiting for would never come. And it hit her hard.
“You find out that life isn’t going to be what you thought it was going to be,” she said. “You had all of these ideas of things you were going to get to do as a parent. Coach your kid’s team. Take them to the prom. Watch them get married. All of those things start to flash in your mind in front of you. Your kid is never going to do those things. And that’s a really hard thing to take.”
But today she is trying to turn all those “nevers” into “somedays.” Teddy, now six, can walk and feed himself. He can use limited sign language to communicate. And they aren’t finished yet.
The Rokitas are now on a mission to help others dealing with this rare diagnosis. Kathy is organizing the first ever Angelman Syndrome Foundation Walk in Indiana to raise funds and awareness. The event will be held at 9 a.m. May 17 at Carmel’s West Park, 2700 W. 116th St.
‘I know our lives will be different’
During Teddy’s nine-month check-up, Kathy was concerned that her son couldn’t sit up yet. She was looking at all of her friends with babies and they were much further along than her child, but doctors just kept telling her to be patient.
“We were told, ‘He’ll probably catch up. He’s probably just a little slower. He’s a boy. Boys develop slower,’” she said.
She searched the Internet to try to find out what could be wrong. Never once did she suspect it was Angelman Syndrome, partly because she didn’t think twice about one of the symptoms: giggling. To her, he was just a happy baby.
Part of her wanted to believe the doctors. That he would just grow out of it. Part of her didn’t want to know if something was seriously wrong.
Eventually she had to know, and they got a blood test to check for about eight or nine possible disorders.
As they were going through the list, the doctor asked her if she had heard of Angelman’s Syndrome. She said no.
“He made me promise that I wouldn’t go home and Google it, and I didn’t,” she said.
But two weeks later, Teddy started having seizures and they rushed him to the hospital.
The attending physician asked if he had ever been tested for Angelman’s. She said yes, but they were waiting on the results.
“So of course I went down to the car and got my laptop and looked it up,” she said. “And there was nothing good online. That was four years ago and there was nothing good. And now there’s a lot of real good hopeful information. But back then it was really scary to get that diagnosis.”
When she received the confirmation she feared, she was eight and half months pregnant with her second child.
“It was not something I wanted to hear at that point in time,” she said. “It is a game changer. You fall apart and pick yourself back up and figure out what to do. I did a lot of bargaining. ‘Please let me wake up tomorrow and let this not be Angelman’s.’ And then you get to the acceptance stage, which I came to pretty quickly because I was pregnant and I wanted to figure out a way to give my kids the best lives they can possibly have. I know our lives will be different, but that’s OK.”
‘I hope my story helps others’
Kathy met with physical therapists to try to systemically tackle Teddy’s issues. And the results have been inspirational.
Teddy can now hold a fork. He can climb himself up on a counter, turn on a sink faucet and run his hands under the water. He loves water. He’ll spend hours sitting in a three-foot kiddie pool outside. He can play with toys and wrestle his brother Ryan.
But the biggest milestone came with an email from Teddy’s teacher.
Kathy received a video attachment in her inbox but didn’t have a chance to watch it. She went to pick up her son from his learning program when the staff excitedly told her she had to watch the video.
At the time, Teddy was using a walker to get around. He could take steps here and there but couldn’t travel far. But on this video, they threw his favorite squishy ball more than 20 feet down a hallway and Teddy started to move.
“And he’s got no walker, and it hits me. He’s going to walk this hallway,” she says, choking up in the retelling. “I’m crying. Everyone’s crying. It makes me get teary just to talk about. I think everyone gets excited when their kid takes their first steps, but probably nothing compared to just joy that I got to experience.”
After seeing Teddy’s progress, Kathy started to decide maybe she could help other parents in her situation.
“I hope my story helps others,” she said. “Maybe someone else can look and say, ‘Wait, they said my kid can’t walk, but this kid does. How can we make that happen?’”
‘He’s going to make a great impact’
The Rokitas haven’t received much publicity about their son’s disorder. For the longest time, they didn’t want to talk to anyone about it. It was private and they were protecting Teddy.
Part of the reason Kathy wants to get involved now is because the disorder is so rare and unknown. It is estimated that one in 15,000 children are born with this disorder but it is often misdiagnosed. Compare that to autism, which affects one in 68 children in the United States, according to the Centers for Disease Control.
The rarity means less funding and research. Kathy hopes to raise more funding and awareness with her walk. When she started organizing the event, advisers told her to set a conservative goal of about $9,500 in donations, but the walk has already raised more than $48,000 a week before the event.
Todd Rokita, a former two-term secretary of state and current Congressman representing Indiana’s fourth district, is also using his influence to encourage further understanding.
While he opposes Obamacare, he believes the government does play a role in medical research.
During a speech to encourage funding for the National Institutes of Health, he told members of Congress that he still believes the private sector is the most efficient way to provide medical care, but that he also believes, “there are times that the private sector cannot reasonably be expected to do the research and development needed because the issue, the syndrome, the disease might be so rare that it is economically prohibitive from a return of investment perspective.”
Even if there’s a long road ahead for research, the Rokitas just hope they can provide a happy future for their son.
Kathy smiles as she looks at a picture of her son, calling him “perfect the just way he is.” She loves that he wants to hug everyone he sees, even every random stranger while shopping at Target.
“It’s just hard to have a bad day when you are around him,” she said. “I know he’s going to make a great impact on this world.”
