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Why I Advocate for This Life-Changing Surgery for Cerebral Palsy

Cerebral Palsy (CP)

Nicole Luongo

Cerebral Palsy & Selective Dorsal Rhizotomy (SDR)

I have Cerebral Palsy and in 2012, I stumbled across information on Facebook about a life-changing surgery called selective dorsal rhizotomy, or SDR. I’d just turned 39, wondered why I’d never heard about a procedure that could have made me — and my legs — navigate the world much easier.

Applying for Selective Dorsal Rhizotomy (SDR)

At first, I wasn’t going to pursue Selective Dorsal Rhizotomy (SDR). I knew my HMO insurance company wouldn’t let me go out of state, from South Florida to St. Louis, MO, for the surgery. It didn’t matter to them that Dr. T.S. Park is world-renowned for the procedure, or that there really aren’t any other doctors capable or willing to perform Selective Dorsal Rhizotomy (SDR) on adults over a certain age. Curious, I visited Dr. Park’s SDR group on Facebook, read the stories from other patients and/or their parents, watched the videos, and decided to go for it: I had to find out if I was a candidate.

I didn’t have time to waste because the cut-off age for potential candidates was 40 years old (it’s now 50). I took the first step, filled out the online application, and after proceeding to the second step, went to my doctor (and waited for two hours during walk-in hours) to get referrals for everything I needed to send to St. Louis for my evaluation. This included getting X-rays, being evaluated by a physical therapist and taking videos showing me performing a series of exercises (you can watch my pre-SDR videos, etc. on my YouTube channel).

I’m grateful that this part of the process was easy, especially since many people run into road blocks when they ask their doctor about SDR. I didn’t know how to fix the insurance issue, but I I’d cross that bridge if, and when the time came.

The Phone Call That Changed My Life

On October 4, 2012, I received a call from Dr. Park’s office. I was a candidate! Tears welled up in my eyes, I couldn’t wait to share the good news! My family and friends were so happy for me. This was just the beginning. The long road ahead included ironing out the insurance issues, getting my body in the best shape possible — and, spending nearly every day of the next six months sharing my fundraiser to help raise money for my upcoming surgery. It was a very stressful time. So many people (most of whom I’ve never met) donated, supported my cause and I will never forget their generosity.

On Good Friday, March 29, 2013, I had SDR in Barnes Jewish Hospital in St. Louis, Missouri. I trusted Dr. Park, I knew the surgery would help me physically (and in ways that were yet to be determined), but I had no idea just how much my life was about to change. My gait improved dramatically, I found my purpose in life, and just as Dr. Park predicted, I was able to do more with less effort. I went to bike camp to learn how to ride a two-wheeler (#1 on my bucket list), I tried rock climbing, and I even rode a horse named Blue!

Life After Selective Dorsal Rhizotomy (SDR)

It always bothered me that no one knew about SDR. I started telling everyone I knew as soon as I learned about it. After SDR, I was laser focused on getting the word out, honoring Dr. Park and and paying it forward so more adults and children with CP could get new legs like me. So, I did what I did best: write. I wrote about my story on my blog, but that wasn’t enough.

There are 17 million people in the world with Cerebral Palsy, they deserved to have the information about SDR, and I didn’t want them to find it by accident like I did. I’d always dreamed of writing for HuffPost. I submitted my story to them a couple of times, but didn’t hear back. So, I contacted Arianna Huffington, she approved me as a contributor (I cried when she replied) and the rest is history!

My HuffPost article reached thousands of people, some of whom have messaged me saying thank you, that they learned about SDR because of me and/or ultimately went on to have it for themselves or their child.

SDR Changes Lives

SDR is responsible for a myriad experiences since my journey started over four years ago: I made new friends from all over the world, I travelled to England and Wales, and I’m well-known in the Cerebral Palsy community for my advocacy work.

Plus, I’ve been featured in the media (radio and in print), I’ve been published and re-published by The Mighty in addition to other sites, and I was interviewed by Special Books by Special Kids! I continue raising awareness for CP, SDR, and I’m proud that my What CP Looks Like Facebook page is changing the world’s perception of the most common childhood disability.

My SDR journey proves that one small act, one article can change other people’s lives. Everyone has a story. Share yours. You never know who needs to hear it and, you might just change your life —  and the lives of others — in the process.

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