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A Word from NF Blogger and Hero, Courtney Willoughby!

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Courtney Willoughby, NF Hero and blogger, “Courtney’s Column”

Please meet a very special friend of Reggie, myself and Just Ask, Ms. Courtney Willoughby of Red Deer, Alberta.

She writes a weekly blog that we think you would enjoy! It’s called “Courtney’s Column” and it’s very inspiring. But then, so is Courtney.

Several years ago, Courtney singlehandedly raised over $25,000 for NF research at a medical center near her home.

On October 5, 2013, Courtney became the first recipient ever of the “Reggie Bibbs NF Hero Award” in recognition “… of her exceptional courage, strength, and determination in her battle against neurofibromatosis and for her dedicated and tireless spirit in positively impacting the lives of others affected by neurofibromatosis.”

Below is her first blog published in “Courtney’s Column!”

Friday, September 12, 2014

“Welcome!

I want to be the first one to thank you for clicking that link to read my blog…. RIGHT ON! I thought I should probably introduce myself, so here we go!

My name is Courtney Willoughby, I am 20 years old and am living with Neurofibromatosis Type 1. What’s that you ask? Well check out the other page on this blog to learn more about it!

I was diagnosed with NF when I was 3 years old. There is no family history of it in my family, so you can only imagine how shocked and terrified my parents were when I was diagnosed. Growing up, I really never experienced many difficulties with NF, I met all of the major developmental milestones and was excelling in my studies at school. It wasn’t until I was 13 that I truly entered my journey into this whole NF business.

I had a plexiform neurofibroma removed off of my back the summer before I started Grade 8, which was an extremely painful procedure and recovery. At this point in time, I had never had an MRI of my brain, so my pediatrician decided it would be a good idea to have one done to use as a “baseline” reference.

Being only 13, I was absolutely terrified. I was terrified that something would show up on the scan. I was terrified I was going to have a nasty brain tumor that would be cancerous. I was terrified that I was going to need brain surgery.

After the day of my scan, I anxiously waited for the test results. I will never forget the day that my doctor sat me down and delivered the news.

I had a brain tumor.

It was inoperable. It truly felt like I had the wind knocked out of me. I couldn’t breathe. I kept asking myself “Why? Why me?”. I truly thought my life was over, my heart was broken. My doctor told me that we would need to keep a close eye on the tumor to make sure it wasn’t growing. I went home with my Mom that day as a completely different person.

After that diagnosis, I started having extremely horrible back pain, and I was soon diagnosed with scoliosis. After that, I started having headaches every day of the week (after seeing over 6 neurologists and 4 neurosurgeons, I still have headaches every single day!)

Over the next few years my diagnoses included: hypopituitarism (a rare hormonal condition), growth hormone deficiency, an undiagnosed hormonal condition, overactive bladder, mesodermal dysplasia (ribbon rib deformity),  hypertension, chronic sinus tachycardia, grade 1-2 heart murmur and multiple tumors in my leg, arm, auditory canal and pelvis.

The fact that I am sharing this with you right now is a miracle.

There was once a time in my life that NOBODY knew of my condition. It was my little secret. I didn’t want people to know because I didn’t want to be labeled a “freak”. I didn’t want to be ostracized or treated different than my peers. I hid everything, and it eventually took a serious toll on my health.

I developed depression and a severe eating disorder. I was a mere 84 pounds at my lowest weight. This isn’t something that is easy for me to admit, it’s only been recently that I am able to talk about it. You see, I never was overweight or anything like that. I was actually always the scrawny kid in  class.

The anorexia was all about control. I couldn’t control my NF. I couldn’t control the tumors growing in my body. I couldn’t control anything it seemed like… but I could control what I ate.

I stayed in this funk for a good 3 years, but everything changed when I had a once in a lifetime opportunity to meet Reggie Bibbs. If I told you the entire story you would probably be here for another solid half hour to read the rest of my journey, but I am going to keep it short and sweet.

Reggie Bibbs saved my life.

I was in such a dark place, with very scary thoughts running through my head. Reggie changed all of that for me. He made me realize that my life was worth living, and that NF didn’t have to define who I was.

Yes, it was part of me, but it didn’t have to be all of me.

Reggie gave me the courage to stand up for who I was, and who I wanted to be. And that is the reason that I am sitting here right now writing this blog post. Reggie Bibbs, you are an angel. I will be forever grateful for you!

So what am I doing now you may ask? I am going into my third year of my Bachelor of Science in Nursing Degree! I am so close to being done I can almost taste it! Once I’m done, I want to be a pediatric nurse working on a medical surgical unit at the Stollery Children’s Hospital. I want to care for children who are going through some kind of illness just like I was cared for. I want to give back.

So thank you for reading this, if there is something that you would like to learn about, put it in the comments below. Thanks for reading =)

Courtney”

 

http://l.facebook.com/l/gAQELoS6XAQFmzkZVAgt6BJewlTO7cTDKSzNSds89vdCr6Q/courtneys-column.blogspot.ca/

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The Tarrant County College Speaking Engagement was a TREMENDOUS Success!

Last week, I had speaking engagements in Dallas and Forth Worth, Texas, thanks to my old friend Bob Hopkins, who I met when he was Executive Director of The Texas Neurofibromatosis Foundation.  Bob Hopkins  is now teaching for Tarrant County College.

Before I go any further,  I want to thank every student for taking the time to come hear me speak.  It would have not been a success without their involvement. Thank you all, for your time and kindness.

At Eastfield College, my friend Patrick O’Dooley emceed the event in front of 50 students.  He stood beside me during Q and A, he and I fielding questions that the students had.

I met Patrick during one of his  motivational classes  a few years ago. Patrick was one of the first people I have met who was instrumental in making me feel good about myself and making every day a TREMENDOUS day!  I’m thankful Patrick was there for me!

In attendance at the speaking engagements were two professors of Sociology and Environmental Sciences, from Collin College.  I spoke UP CLOSE and PERSONAL.  The  President of Tarrant County South College, addressed the students and stayed for my speech there.

By my sixth speech in two days,  I’m told I was a pro and that my speaking abilities were great. Bob said I had every class in the palm of my hands!: > )  Bob said he was proud of  me.  That’s a tremendous compliment coming from someone who speaks as well as Bob Hopkins.

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SXSW VOTING EXTENDED TILL MONDAY!!! VOTE FOR REGGIE SOON AND OFTEN!!!!

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Vote for Reggie Bibbs to host SXSW panel on neurofibromatosis!!!

Reggie has been nominated to host a panel for next years SXSW Conference. His topic: Becoming An Inspiration – One Pixel At A Time.If you all could visit the site and vote, that would be terrific! If you could vote AND leave a comment! http://panelpicker.sxsw.com/ideas/view/2339

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NEW 2009 “Just Ask!” AD CAMPAIGN!

3113186003_d13b1727a7_oWe are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.

The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.

In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.

CLICK TO VIEW ENTIRE CAMPAIGN

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Reggie’s Meeting at Lou’s Office

reglousmall.jpgToday, Lou and I had a meeting about the blog, website and future plans. Everything went Terrific!

While at STANANDLOU, we took a few pictures after the meeting. I’m looking forward to the exciting things we have planned for the website. Of course, I came up with most of the ideas so don’t give Lou all the credit.

Anyway, I will be heavily involved helping the Texas Neurofibromatosis Foundation with their search for a cure for NF. I want to help with their events for 2008. I know I will go to the NF camp this summer.

If you are a regular on my blog, it might be a good idea to start spreading the word about the blog to your friends that have NF. The blog is a good place to find out about upcoming events and also just to share information and have fun, too!

I think people have fun here even if they don’t have NF. Just ask Shelley, Arthur and Lou. Never mind, don’t ask Lou!!!