The Pain of Being ‘the Girl Who Walked Funny’

I’m so thankful to have been published by The Mighty twice in two days! Click on the link to read what it’s like growing up with cerebral palsy.

Will you do me a favor? Comment directly under the article on The Mighty’s site and please share to raise awareness for cerebral palsy and SDR.

Thank you!❤

31 Facts for Each Day of Cerebral Palsy Awareness Month

The Mighty published my article about Cerebral Palsy Awareness Month! Click on the link and comment directly under it (on The Mighty’s site); this will help a lot.

Please share to raise awareness for cerebral palsy and SDR.  Thank you!❤

Celebrating Cerebral Palsy Awareness Month

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I have cerebral palsy, and until I started advocating for selective dorsal rhizotomy (SDR), I was unaware March is Cerebral Palsy Awareness Month or that March 25 is National Cerebral Palsy Awareness Day in the U.S. every year since 2013, when a resolution was passed in Congress. I also didn’t know that World Cerebral Palsy Day is celebrated each year on the first Wednesday in October.

Cerebral palsy is the most common childhood disability, yet we rarely hear about Cerebral Palsy Awareness Month or National Cerebral Palsy Awareness Day in the news. Why isn’t the media paying attention? In an effort to change this I — along with many of my friends and fellow CP advocates — have been posting facts, pictures and videos on Facebook and other social media sites throughout the month. Our goal is to educate, raise awareness and paint the world green for CP. I wrote to President Obama and The White House responded!

Here are the 31 days of Cerebral Palsy Awareness Month according to Firefly:

  1. “Cerebral palsy isn’t contagious. Relax”
  2. “Cerebral palsy is caused by the bit of your brain that controls your muscles.”
  3. “Over 90% of Cerebral Palsy cases are caused pre-birth.”
  4. “Cerebral Palsy doesn’t necessarily mean learning disabilities. People with CP often have an equal or better IQ than everyone else.”
  5. “Most people with CP have a similar life expectancy to everyone else. We’re not leaving anytime soon.”
  6. “Cerebral Palsy doesn’t mean never walking. Many can, many will.”
  7. “Cerebral Palsy can impair communication but we find ways.”
  8. “Kids with CP are still kids. Nothing more, nothing less.”
  9. “About half of kids with CP are born prematurely.”
  10. “There’s no cure for cerebral palsy yet. But nobody is giving up.”
  11. “People with cerebral palsy can lead completely independent lives.”
  12. “Many kids wth cerebral can, will, & should go to mainstream schools.”
  13. “Cerebral palsy doesn’t always save you from a stressful, high-pressure job.”
  14. “Cerebral palsy doesn’t necessarily improve or worsen on its own.”
  15. “There’s nothing ‘wrong with me,’ I just have cerebral palsy.”
  16. “You’ll see many competitors with cerebral palsy in this month’s winter Paralympics.”
  17. “There are four types of CP: Spastic, Dyskinetic, Ataxic, & Mixed.”
  18. “Cerebral palsy is the most common childhood disability.”
  19. “CP affects about 17 million people, equivalent to everyone in the Netherlands.”
  20. “Around 350 million people are connected to someone with CP.”
  21. “Every case of cerebral palsy is as unique as the person who has it.”
  22. “1 in every 500 babies is diagnosed with CP.”
  23. “Two thirds of kids with CP can walk.”
  24. “4 in 5 kids with CP can talk (some too much).”
  25. “Only 1 in 10 kids with CP have severe visual issues.”
  26. “CP can affect all limbs or just some of them.”
  27. “Parents raising a child with CP do not get the huge financial support many people think.”
  28. “One child every hour is diagnosed with CP.”
  29. “3 in 4 kids experience recurring pain as a result of cerebral palsy.”
  30. “Most people with cerebral palsy don’t want sympathy, they want opportunities.”
  31. “Raising a child with CP isn’t the parenting journey I expected, but I don’t resent anyone else’s.”

Visit Firefly’s FB Page to view the complete postcard gallery.

For people living, thriving with cerebral palsy, spreading awareness is important every day. It doesn’t stop once March is over. You can help by sharing this post. And, join us on World Cerebral Palsy Day on October 5.

Radio Interview: Celebrating Cerebral Palsy Awareness Month

I’m excited to be a guest on Kelly’s Corner (click on “Present Activities” then “Radio Show”) to raise awareness for Cerebral Palsy Awareness Month. March 25 is also National CP Awareness Day (ever year since 2013) in the United States. Wear green to show support.❤

Please tune in on Thursday, March 17, to learn why I’m so passionate about selective dorsal rhizotomy (SDR) surgery and more! If you can’t listen live, don’t worry! You’ll be able to listen to the recording online once it’s available.

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National CP Awareness Day Shirt

I’m honored to have my name on this shirt — designed by my friends Richelle Heath, Heaven Ramsey and their team — to raise awareness for ‪National Cerebral Palsy Awareness Day on March 25. You can place orders until midnight Eastern time 2/29/16. The shirt is offered in adult and youth sizes for $17 each.

Please join the A Stairway to the Stars T-shirt Campaign for National CP Day 2016 event on Facebook. Help us paint the world green by purchasing a shirt and/or tweeting this link.

Thank you for supporting the estimated 800,000 children and adults (I am one) in the United States (and over 17 million worldwide) living with one or more of the symptoms of CP.

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After SDR: Touching Toes

I have cerebral palsy. Since seeing is believing, I thought I’d show you how I’m living life FREE of spasticity. Selective dorsal rhizotomy surgery (SDR) changes lives!

There is NO benefit to spasticity! The frustrating part as an adult with CP, is that doctors don’t tell you this information (many of them don’t have a clue) — what they say is hat you won’t get worse, which is not really true. Your CP won’t get worse, but due to spasticity, the effects of it will continue to harm your body over time, often leading to problems in adulthood. I’ve heard stories about so many people with CP who ended up in a wheelchair later in life. I’m not saying this to scare anyone, but rather, to encourage you to learn about how premature aging affects all of us. SDR is the only medical procedure that can permanently reduce and/or eliminate spasticity.

I found out about SDR by accident when I was 39 and, if I hadn’t stumbled across the information, I would still be struggling to do (or in some cases, not even be able to do) things others take for granted. And because I had SDR, I rest assured knowing that I’m free of spasticity,Yes, I still have CP, but thanks to the surgery, the wear and tear on my body — with respect to spasticity only — will not continue. This is why I am so passionate about sharing the information. I want more adults and children to get new legs like me, and be FREE of spasticity and so much more!