I am beautiful!

Originally posted at: http://womenreshapingtheworld.com/blog/candices-storyThank you, Candice Lorriane Patterson, for permission to share your story on this NF blog.

 I am beautiful, but there is a world full of people trying to convince me that I’m not. I feel it when I walk into a room, I see it in their eyes and I hear it in their words. I am beautiful. For 40 years I have lived with a facial deformity caused by Neurofibromatosis, and for 40 years the best surgeons have taken me apart and reassembled me all in the name of beauty. I have 26 surgeries under my belt.

Photo by Kelly Coulson

Summers began with an operation, and my head bound in gauze and pressure dressings; I was unable to see the new cuts on my face and the new scars that I would have to befriend. I was trapped in a hot, sound-muffled prison of my pain. The bandages would be removed to reveal a face I did not recognize. A face bruised, bloody and damaged all in the name of beauty. I would have to learn this new face, accept this new face and love this new face in all the stages of healing.

Do you know what it’s like to love yourself unconditionally? In my cocoon, I would heal. My face has been broken so many times that I have suffered every disability of senses known to man; my vision temporarily gone because my eyes were sewn or swollen shut. My ability to speak was taken away when they shattered my jaw into pieces. I’ve spent weeks shoeless using my bare feet to feel the floor and navigate a journey to fix myself a glass of water; it was a marathon of will as the meds disoriented me. I’ve breathed through straw-sized openings in my mouth because my face swelled so badly breathing was the only goal. I’ve run 5k’s, swam for miles and danced my way into preparing my body for battle and healing. I have thought that I would die, and sometimes wished it too, just to be released from the pain.

I also knew that life was just too beautiful, and eventually the pain will leave and a butterfly would emerge again. My mother empowered me to believe in myself and my beauty. Had she sheltered me from the world, she would have disabled me. I’m not disabled, I’m amazing. There is no cure for NF. The tumors will grow and destroy at their will. Maybe it will be months, years, we don’t know why they come or return or attempt to destroy. I will never be destroyed by them. Living with NF is like constantly climbing a mountain, and as soon as you reach the top you are shoved off, left battered and broken at the foot of the hills. Picking yourself up over and over again is not easy. The mountain may kill me, but I will never lay at the foot of it surrendering to its pain. I am beautiful.

Photo by Kelly Coulson

I am a powerful woman, triathlete, healer, friend, lover, fighter and even Wonder Woman needs a makeover sometimes.

I am Candice Patterson, Some Assembly Required.

This is for you, Abigail...

My beautiful friend, Shannon, had Neurofibromatosis Type 2 (NF2), a baby girl and loving husband. 1987 - 2014 She is dancing and singing again, with The Lord. Support her husband and baby girl. Donations may also be mailed to the following address, payable to Charles Wachal Charles Wachal 6053 Slocum Rd Ontario, NY 14519 February 14, 2014 - It is with great relief to announce the ending of Shannon's battle with neurofibromatosis Type 2. Shannon went home today [February 14, 2014] surrounded by her wonderful family and some close friends. Shannon now has a new body without any tumors, pain, or discouragement. She died peacefully in her sleep. Shannon wants us all to have the courage to continue without her and wants us to know that she is enjoying her life now. Please continue to pray for my family and friends as we mourn the loss of our wonderful loved ones. Please stay tuned for funeral arrangements as they will be announced sometime next week. R.I.P., Shannon Drummond Wachal, 1987-2014. My daughter Anne's dear friend and confidant since 2007 in the sorority of young women with neurofibromatosis type II (NF2). She invited Anne to visit RIT, where Anne transferred, earned her undergraduate degree and met her husband. Whenever we visited Anne in Rochester, Shannon was at the dinner table. She leaves a grieving husband, Charles Wachal, infant daughter, Abigail, parents and siblings. Shannon had enormous faith in the face of great adversity. As that courageous and loving heart beat its last and heaven's morning broke, I like to think that flights of angels sang her to her rest and that all the trumpets sounded on the other side. Let those of us who remain rededicate ourselves to supporting the search for a cure for NF.

Shannon's Fundraiser

My good friend of 7 years, Shannon, who like myself has Neurofibromatosis Type II (NF2), is entering hospice due to the multitude of intractable issues arising from her NF2 tumors. I thank God for her friendship as she invited me to visit RIT, where I both graduated and met my husband. We also thank God that I am among the most highly functional NF2-ers and that I and my husband are able to run road races, marathons and triathlons as fundraisers for medical research to find a cure for NF. You may donate here https://www.youcaring.com/ShannonWachal to help with hospice care, funeral expenses, and caring for their daughter, Abigail. (Or you may donate here 100% of contributions go to the Children's Tumor Foundation for medical research. http://hopecur.com/AnneNoble) Help Shannon be the healthy mommy, she dreams of being!

Beneficiary: Shannon and Charles Wachal

Undies in the SNOW, to find a cure!!!

You know what sucks? Pants. 

You know what also sucks? Neurofibromatosis. 

Let's get rid of them both this February! 

Donate here: www.hopecur.com/AnneNoble 

On Valentine’s Day we will be running to raise funds for medical research on Neurofibromatosis. That is the condition that, in its most visible form, was seen when Pope Francis recently was photographed embracing a man covered with hundreds of tumors.

Most Neurofibromatosis tumors are on the inside and thus are less visible.  We will be stripping to our skivvies and running around in the frigid temps, all in an effort to raise funds for medical research to benefit thousands of kids like Jack Burke.

Jack is the kind of kid that immediately becomes your best friend - such a character, a great big brother and just happy as can be. But Jack's journey is a tough one. He was diagnosed with NF (Neurofibromatosis) at two-years-old and, along with other tumors, he has a plexiform neurofibroma (a complex tumor) just behind his left eye. And now, just this September, they discovered a new tumor on his brain stem that needs immediate intervention. So, as you are reading this, he will have started 15 months of chemotherapy. An 8-year-old going through chemo!

NO CHILD SHOULD HAVE TO GO THROUGH THIS, so we are running in our undies in the freezing cold because we will do whatever it takes, no matter how ridiculous, to help find a cure for NF!

We pray that through this we can touch others and show them the love of God. Others who have been affected from NF have already shown us that you can live fully and with joy no matter what you look like on the outside. Currently, there is no cure for NF2, though promising medical trials are underway. With your donations, we can change that.  

 I (Anne) was diagnosed with Neurofibromatosis Type 2 at the age of seven. I have undergone numerous surgeries. Although I become deaf, I consider myself to be blessed with a milder case. I know many people who also have the disorder and who are not able to run or ride a bike due to physical impairments. I am also blessed to have a very good Auditory Brainstem Implant and after much practice I can have conversations and am even able to talk some on the phone again! We got married in June 2013 and are enjoying newlywed life! We also do triathlons (in full clothing), for the same cause, once it gets warmer!

In 2012, we raised over $10,000 for CTF. Your donation, whether it be $5 or $500, will provide critical funding to the Children's Tumor Foundation and allow for clinical trials, treatments and ultimately the cure we desperately need. It would be awful for this economic turndown to interfere with Jack’s health, or the research needed to find a cure for the thousands of others like him. A dollar per a mile [in a marathon] would be $26.20. $10 per a mile would be $262.00.

We sincerely thank you, Jack thanks you, and the millions of families who will benefit from this effort thank you.

100% of donations go directly to the Children's Tumor Foundation.

Donating online using either of our below links is easy, safe and secure.

CTF is a 501(c)(3) non-profit organization rated 4-stars by Charity Navigator and priding itself on spending 82.4% of its revenue on program expenses and less than 8% on administrative costs.

Sincerely,

 Anne and Steve Noble

http://hopecur.com/AnneNoble  and  http://hopecur.com/SteveNoble

If you prefer to send a check, you may send it to:
The Children's Tumor Foundation                                                                             

95 Pine Street, 16th Floor                                                                                          

New York, NY 10269-0711                                                                           

Please put the following on the memo line: A. / S. Noble – Cupid’s 2014  

____________________________________________________________________________

If you are interested in contributing to this blog, which I began as a multi-author college literacy project, about "going many miles for NF," please contact me.  

2013 Recap... WEDDING!

Well, I've not been able to post into this blog for quite a while, because I just hadn't gotten around to contacting my Alma Mater, RIT, which this account is connected to, regarding my loss of ability to log in!

My last post was at the end of 2012, but I'd like to keep this blog project alive and going, even if the posts seem rather scattered.... and of course related to the original topic - Neurofibromatosis... although that might include a few interruptions, occasionally. 

What happened in 2013? Well, I married my best friend!!! It was a beautiful June day, on top of a hill overlooking farmland, in central NY! Yep, I think that is pretty much all that happened!!! Oh, and we moved to the beautiful state of NH!

I'll write another post, soon... but I couldn't leave this out! (apologies for the lack of NF connection for this post... but the flowers are CTF colours... and my favourite colours!)

My Story: Video!

I’m Anne Shigley and I’ve lived with NF2 for 18 years.

After a hearing test in first grade in Atlanta, GA, I had an MRI that led to NF2 diagnosis.

The summer after 2^nd grade, in the middle of the Atlanta Olympic Games,

I came down to breakfast one Saturday with the right side of my face paralyzed by an NF tumor.

Within a couple of weeks, my parents flew me to Los Angeles where Dr. Brackmann at House Ear Clinic took out the tumor.

I woke up grinning from ear to ear… and asking for a hotdog, but deaf on the right side.

Through the rest of my childhood, NF was an issue because I heard only on one side and had to have MRI’s every year.

But otherwise, I was just a kid going to school, enjoying Girl Scouts, babysitting, art, and then cross country, swimming and track teams in high school.

Going into my senior year, my doctor in Atlanta said the tumors in my left auditory canal and on my spinal cord, which he had been watching for years, had grown.

On a visit to the Harvard NF Clinic in Boston, Dr. MacCollin told me that someday I would be deaf, though probably not right away. I said, yeah, maybe when I’m 80.

On the flight home, I cried silently the whole way.

Six weeks later, the day my parents and I were flying back to Boston for spinal cord surgery, my hearing faded out. My parents and the nurses had to write on white boards to communicate with me.

As soon as they let me travel, I flew to LA for another surgery at House Ear to decompress the tumor, but it did not restore hearing.

I finished high school with a captionist sitting beside me.

Going deaf at 18 was hugely traumatic.

I can understand why some people would give up on life.

The next fall, I entered Maryville College in TN, and was happy to be on the cross country team. Maryville was great but I realized I needed more to learn to live with my hearing loss.

That spring, I took a medical withdrawal and got an Auditory Brainstem Implant at House Ear, spent the summer at Gallaudet in Washington, DC, for a crash course in sign language, and in the fall transferred to Rochester Institute of Technology for the National Technical Institute for the Deaf.

RIT, where I graduated last spring, was great for me, mainly because of two people:

Catherine Clark is RIT’s audiologist who works with all the students who have cochlear or auditory brainstem implants. With her help, I can now understand about 90% of speech, even though without my bionic ear I am completely deaf.

Now I’m in a masters program in early childhood special ed at Roberts Wesleyan, functioning in a hearing classroom with just minimal support.

The other person is a boy I met on a Campus Crusade spring break trip – Steve Noble, my fiancé. We will be married next June. Steve is totally supportive, doing triathlons and swim races for CTF, as well as this marathon…. Even though he equates running with pain and misery!

And my parents back home in Atlanta have been very supportive every step of the way. They couldn’t be here this weekend, but dad did a half marathon this morning in Savannah and helped raise funds from a lot of his friends.

When I see all the lives that have been ravished or cut short by NF, I realize that I am very fortunate, blessed to be a blessing to those who have been less fortunate with NF.

Thank you all for your support for CTF. Together we will help find a cure!

The flamingos that flock for a cure!

Okay, this actually started a few weeks ago, but I forgot to ever blog it and I think it is one of the coolest fundraising things I've seen for NF, or any other charity for that matter.

This is Connor (same kid from previous blog as seen here http://www.blogger.com/blogger.g?blogID=2437717822165880323#editor/target=post;postID=10847343610444969)

...and this is the flamingos!

9-year old Connor is a very smart kid, who has the genetic disorder, Neurofibromatosis Type 2 (generally called "NF2" for short.)  This whole Texas family is into this fundraising to help find a cure for NF, and if a person makes a donation of a certain amount, they can get their yard flocked by these cute plastic flamingos!

Thank you to their entire family for giving permission to include Connor in my fundraising efforts! :)

http://ctf.kintera.org/nfenycmarathon2012/anneshigley 

More fundraising ideas: Fundraising

Great ideas from YOU: Contact a restaurant in your local area to see if they will contribute a portion of their sales to your fundraising one night.  Thank individual donors on facebook by tagging them and writing a special message about them. OR ask your company if they will host a Casual Day! Ask your coworkers to contribute to your campaign in return they are able to wear jeans, sneakers or anything casual. Include fundraisng link in all e-mail signatures. Hold a bake sale, garage / yard sale or car wash for a cure!