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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/

Some friendsand and I went to see Kevin Nealon at the Improv last night. Click on the link, valt then photo. Check out the photos on his website, as well as the photos of my facebook, and flickr page.  I met Kevin a fews years ago in California, when visting my friend Scott. That is how I met Kevin. I’ve been friends with Kevin 3 years after that day. Kevin contact me to say he would be in Houston, and he would like for me to come see him. We did, and he really made me happy, as he did the same for my friends.

This is what Kevin did for me.  He wore my just ask shirt on stage. He gave me free tickets. He talk to me after the show, Was not in a rush to leave. He posed for photos with me. He collect lots of doodles for National Doodle Day.

Joan Rivers, Jane Leeves, Wendie Malick, Jon Lovitz, Valerie Bertinelli, Garry Shandling, Roseanne Barr, and of course Kevin Nealon.   And Kevin gave me this medallion. It was given to him by Brad Paisley. It reads Expect Great Things.  Kevin really made me happy, and Im thinkful for what he is doing for all of us that are affect by NF.

Hey Friends, I need a little patience from my friends and new customers… as you may know there’s been a large increase in Shirt sales due to the TLC airing of my visit to Salt Lake City  recently.  I’m not complaining, and I am very pleased with the increased sales, but now I have to work harder and find more willing friends to take me to the Post Office.  I’m Just Asking… for a little understanding in the delay of your shirt delivery.
I am mailing them as quickly as I can get them to the post office.  My last shipment went out October 18th. All are mailed at first class parcel.  Please allow 7 to 14 days after your order is place.
ps. I have decided to not Iron them, it speeds up the process, and there’s less damage to the shirts.  (that was more humor..)

“My Brand New Face”

Click HERE to view teaser!

In many ways Maurice Simpson is just a regular guy who loves his wife and works hard at his job.
But there’s something about Maurice that sets him apart from everybody else.

Since childhood he’s had a massive disfiguring facial tumor caused by Neurofibromatosis. Amazingly, an anonymous donor has offered to pay for surgery – but before the operation he’ll come face to face with Reggie Bibbs, an NF sufferer whose own surgeries were a failure.

With the tumor so deeply fused with Maurice’s head is surgery too much of a risk for a brand new face?

Maurice Simpson is a family man with a giant facial tumor that he’s never let get in the way of a good time. But now it’s putting his life at risk and Maurice has decided to undergo a dangerous operation to risk everything – for a brand new face.

Check your local listings!

The University Of Texas, Health Science Center, is in the process of conducting Rapamycin clinical trials, to treat NF patients with tumors on the body.  I’m happy to say that I’m one of those being treated.  I feel hopeful as well as others members in my family. My mother and sisters are happy to take part in this study.  Second day in the study, and looking forward to what I believe will be a huge step in finding a cure for NF.   I also plan to give updates on any improvements I see on my tumors.

Anyone needing information about taking part in the study, stay tuned. I will have more information on who to contact in Houston, for The Rapamycin Therapy.

ia-logoA friend of mine and Reggie’s, Jason McElweenie, submitted Reggie’s name to host a panel for next years SXSW: Becoming An Inspiration – One Pixel At A Time http://panelpicker.sxsw.com/ideas/view/2339

The description is as follows:

Reggie Bibbs has been on a one man crusade to raise awareness for neurofibromatosis (NF) come listen to him tell his story and help you and your organization turn your clients and friends into raving fans for your company or group

Here’s where we need your help: This is a 3 step process. A panel is submitted and then placed in the PanelPicker where the public comments and votes on it. After the voting and commenting is done a group of SXSW insiders vote on which ones they like and the board at SXSW also votes on which one they like. If the public comments and votes a lot for this one we have a chance of swaying the other two parts of the in our favor so now we have to promote, promote, promote.

I hope this can further raise awareness for Reggie and NF, speaking to a crowd of early adopters can do nothing but help raise awareness. If this panel is selected I say we plan a sort of media blitz to make Reggie the unsung hero or face of the 2010 SXSW conference. First thing we need to do for Reggie is get him on Twitter I have registered his name http://www.twitter.com/reggiebibbs.

Can you send the PanelPicker link above to everyone you know and ask them to not only comment but also vote for the panel?

This would be an incredible experience for Reggie as well as a great boost to his mission to spread the word about neurofibromatosis.

If you could take a few minutes to help, it would mean the world to me and Reggie!

Thank you,

Lou

3770322779_4319f83ec5_b Lou’s vacation photos from Houston to New Orleans to Memphis TN to Nashville TN to Cincinatti OH to Youngstown OH to Franklin PA to Cleveland OH to Knoxville TB to Tuscaloosa Alabama to New Orleans to Houston

3611639864_e03a2a5def_bWe had a great Music Nite last Thursday Nite! We decided we needed to work on our music more, especially now that we have a new member to the group, writer/composer/musician, Mark Sansoucy.

Mark premiered the song he wrote, “Just Ask!” last Thursday and it was killer. With just a little more practice, this could be the Neurofibromatosis National Anthem!

WATCH THE VIDEO

SEE THE PHOTOS

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school-outThis is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.

3129024156_2166a4d216_bMy favorite time of the year is Christmas. Here are some fun photos taken around the office I wanted to post.

I want to wish my friends and fellow bloggers a Merry Christmas and a Joyful 3129321805_eba20415ec_bNew Year.

I will be here on the blog all week ready to blog with anyone who posts. Lets talk about what you have planned with family or friends.

Look forward to seeing you here.