Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.

If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.

Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.

When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.

The spark? Insecurity.

• •

Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.

Sara was OK. But doctors said Katy would never walk, never talk.

I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”

I’ve read Fetter’s blog. Insecure? Come on.

Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.

For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.

Regardless, Fetters walks with purpose, determination and an emerging confidence.

We walk around campus, climb stairs, sit – and talk.

Those baby doctors had no idea whom they were dealing with.

• • •

Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.

Her left hand works, but not nearly as well as her right. He left leg? Not so much.

But that has never stopped Fetters from doing anything. Except surfing.

Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.

Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.

Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.

Growing up wasn’t about can’t. It was about can.

• • •

When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.

When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.

She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.

“Looking back,” Fetters laughs, “I was a nut.” A tough nut.

She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”

But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”

Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.

But her teen years proved even more challenging.

• • •

In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.

Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”

Fetters used the comments as fuel, posting her best mile ever.

Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”

High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.

One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.

She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.

Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.

The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.

One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”

Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”

Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”

But it wasn’t just others that Fetters was inspiring.

• • •

Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.

“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”

But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.

For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.

It could be a book for all teens.

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Ashton Kutcher’s Twin Brother Michael Advocates For Cerebral Palsy

October 1st, 2012
By Kris Kitto

Until now, Michael Kutcher has been known as famous actor Ashton Kutcher’s twin brother. Michael, who was born with cerebral palsy, is determined to change the current disability funding model. He made a huge step towards that goal by visiting congress this year, on behalf of the Reaching for the Stars foundation.

Here are 20 questions asked to Michael about his involvement with the cerebral palsy community and his preparation for meeting with congress.

Why have you decided to lobby Congress?
I’ve found that the disparity between cerebral palsy funding and funding for other disorders is actually pretty unsettling for me. On a personal level, I want to be able to find a cure for it. I’ll be 33 years old, and I’ve lived with it all of my life. So there may not be hope to help me, but there’s definitely hope to help others out there and children who are going through a rough time in their younger years.

What are you asking Congress for?
We’re asking for them to dedicate $10 million toward the [National Institutes of Health] and [Centers for Disease Control and Prevention (CDC)]. There are more than 800,000 people with cerebral palsy in the U.S. today — one in 278 children [is] affected by cerebral palsy — and there’s no line item in CDC funding at all. 


Are you interested in politics?
I like to keep up on politics and especially foreign affairs. I’m big into the whole Iran controversy as well as North Korea. A lot of people look at me weird when I can name off [President Mahmoud] Ahmadinejad of Iran and [North Korea’s] Kim Jong-il as opposed to the quarterback of some football team.


What made you decide to speak out now?I’ve been asked to join organizations before … none have really hit home with me as much as Reaching for the Stars. I finally told myself that I’m a voice not only for myself for having cerebral palsy, but also for children who may not have to deal with some of the issues I had to deal with growing up. Being Ashton Kutcher’s brother, it gives me the opportunity to be that voice, and I realize that I needed to use the opportunity to help others. I feel very fortunate that I have a voice to be the voice for children. There may not be time to help me, but if we can find a cure, there may be a change to help those with cerebral palsy.

How does Cerebral Palsy affect you?
I have limited mobility in my right arm and my right hand. I have a very mild case of cerebral palsy. I wear glasses; I wear a hearing aid; I have slurred speech. To the naked eye, many people don’t know that I even have cerebral palsy because it’s so mild. But if you look at some of my friends who have more severe forms of CP — you’ll see some people in wheelchairs, inability to walk, inability to speak. I have a friend who has to use a machine to communicate with her parents.

Which members of Congress and White House officials are you meeting with?
We’re meeting with Kareem Dale, who is the president’s special assistant on disability policy, so that’s going to be a big meeting for us. Also, we’re meeting with one of Sen. Harkin’s advisers — my own senator, Harkin — who covers health on the Appropriations Committee. We are also meeting with Sen. [Chuck] Grassley’s [R-Iowa] team as well, the chief of healthcare there. I believe we’re meeting with Rep. [David] Loebsack [D-Iowa], my congressman, and possibly Rep. [Tom] Latham [R-Iowa] as well.


What did you do to prepare for your trip to Capitol Hill?
When I became involved with the organization, I wanted to make sure I had my facts straight. I did research on their organization as well as additional research on cerebral palsy. And I’m glad that I did. Even though I’ve had cerebral palsy for 32 years and had to deal with it, I’ve never understood the effects of it or the lack of support in the legislative forum. And that’s what’s driving me to Washington.


Have you ever considered a career in politics? 
I graduated with a major in business management and marketing and a minor in finance from Mount Mercy University. I’ve always told myself, as I became older and got more involved and my obsession of politics took hold, I always told myself that if I went back to school, I would pursue the opportunity to study political science. If the opportunity arose [to run for office], I would definitely look into it. This is my first step in going to Washington and entering the political arena, so it’s exciting right now.


We know your brother, but we don’t know much about you. Tell us a little bit about yourself.

I work for one of the leading pension providers, Transamerica Retirement Services. I’m actually in a transition role right now — I’m a part of the internal sales division, but currently transferring to a management position. We sell 401(k) plans to small and mid-size markets.

I live in Cedar Rapids [Iowa], born and raised, I went to Mount Mercy University here. It’s a nice, humble place to live, and good to raise a family. I have a six-year-old son whom I raise. I enjoy all the activities that a parent would. I like to golf. I like to travel. Of course, it’s Iowa football season, so I’m rooting for the Hawkeyes. 


What was it like seeing your twin brother rise to international stardom?
It was great. I’m so proud of him and his efforts and I think they really send a powerful message … to anyone who has a dream. You look at a kid through high school and through college — all he wanted to do was act. That was his dream. Through one way or another, whether luck took hold or not, he found his way. He never gave up. He shot for his dreams. And that’s what makes me proud of him.


Any other plans to continue speaking about Cerebral Palsy?
Yes, definitely. I hope to continue my efforts on the Hill. I hope to be back next year and the following year until we see some changes in funding and make a difference.

Here is a fantastic video recap of Michael’s journey to the White House courtesy of KGAN.

http://www.youtube.com/watch?feature=player_embedded&v=uIR2whmYb1s

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