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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”

 

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2 thoughts on “A Word from NF Blogger and Hero, Courtney Willoughby!

  1. Courtney and Tracey Willoughby are two of our favorite people in the world! Courtney’s energy and passion is inspiring and, if you’re not careful, very contagious! Her mom, Tracey, is an incredible mother, cheerleader and human being who will stop at nothing to help her daughter achieve her goals, dreams and happiness! The world is a better place with Courtney and Tracey in it!

    1. Thank you so very much for the very kind words, Lou! I don’t see myself as all of those things you said! I’m just doing what any parent would do, under the circumstances!!

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