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.  

Silenced Marathon

(WRITTEN IN 2008)


For eighteen years in the hearing world in which I lived I thought “deaf” was the worst insult anyone could fling at me. When a doctor told me in the fall of my senior year of high school that I would become deaf at some point in my life, I responded, “Yeah, maybe when I’m 80!” I never dreamed that six weeks later, I would lose the hearing that I had taken for granted all my life.

**** Prettiest Smile ****

It is a hot summer day in 1996; I am nine years old. (Yawn!) … “Anne… Sweetie… Wake up! It is Saturday. Will you help me make the pancakes? Shhhh… Mommy and Ken [my little brother] are still asleep,” I hear Dad say. I am hungry, so I bound out of my cozy old double sized bed that lies in the center of my big bedroom, with light green painted walls surrounding me. I dash downstairs, as if I were running from something. I get out Aunt Jemima Buttermilk pancake mix, 2% milk, 2 eggs, Canola oil, syrup, a bag of Nestle-House chocolate chips, and a brown-speckled ripe banana. As I mix the ingredients in a large bowl, and enjoy the feeling of squishing the unpeeled yellow banana running between my tiny fingers, Dad tells me that he got more Olympics tickets for my family to see some games in the next few weeks. “Maybe I can be in the Olympics someday”, I think to myself. I watch Dad flipping the oozy slabs of light brown batter into the air, and then like magic each one lands perfectly back on the hot griddle. I walk outside to feed our old yellow Labrador retriever, Destin. I feel the heat of another summer day in Atlanta as the sun bakes against my youthful pale skin; it is a perfect day to go to the neighborhood pool.
(Squeak) I swing the kitchen door open. I see that Mommy is awake now, and the smell of scrumptious pancakes fills the air. She is taller than me, beautiful like a Dalmatian, dark brown hair, smells of flowers, Pantene shampoo, and Lever 2000 soap. She is wearing her long pink terry bathrobe, as I run up to hug her. She whispers into my ear “I love you.”
Mom, Dad, Ken, and I sit at the circular kitchen table; I happily gobble down my pile of pancakes. Mom comments to Dad; both look at me and ask why I am making goofy faces. I tell her that I’m not making silly faces or playing childish games. Mom walks me to the bathroom; she tells me to look into the wide mirror, which covers half of the wall. I obey. I look into the mirror, but I walk away as I deny seeing anything. It is the summer after second grade. One side of my face has become paralyzed, overnight.
Within ten days my parents had me on a plane to California for surgery to remove a tumor on the auditory nerve of my right ear. I was already functionally deaf in this ear since I was seven years old; that was also when I had learned that I have Neurofibromatosis Type 2 (NF2), a rare genetic disorder affecting 1 in 25,000 birth, which commonly causes benign tumors on the auditory nerves and spinal cord. While I was very scared, I knew the surgery had a great outcome, because I woke up grinning from ear to ear, something that I couldn’t do before going into surgery. With the medications and lack of activity, I gained a lot of weight that summer. When I returned to school to start third grade, I had a horrible time. I was living in a nightmare, a nightmare that I couldn’t wake up from. At night I cried myself to sleep. There was a mean girl and her friends on the playground who harassed me every day and called me “pregnant.” My friends from Girl Scouts didn’t know what to do at that young age, and stopped sticking up for me. I wanted to hit her, but I knew that was not right; I ran away and cried.
**** Cookies + Brain Surgery = Babies ****
I am chubby. I am ugly. Half of my head is shaved. I wear a bandana, trying to hide, to hide from the world. I wish I can disappear. I am only nine years old, and those mean girls call me pregnant. I am a child. I am not pregnant! Now, my friends have left me; they walk away. I run. I run far, but then I stop. I am breathing harder than I ever have. My tiny legs do not take me as far as my aching heart and trampled mind have the desire to go. I feel like a baby bunny in a field of big bulls. The bulls are chasing me. I will die, not because I am small, but because they are huge, mean, and hungry. Surely I will die. I will wait until I get home before I cry. I am a big girl. I am strong. I have dreams of flying away, like Peter Pan, I want to fly away.
The surgery and its effects caused me to have a horrible time fitting in at school. I went through a lot of changes in my schooling. Situations similar to what happened in third grade repeated through elementary school and middle school. When it was time to go to high school, I decided to go to a large public high school with magnet programs in arts and sciences. I was a chubby little girl, but when I got to high school, I went out for cross-country, lost every ounce of “baby fat,” and through pure determination and diligence transformed myself into a dedicated athlete, lettered in three varsity sports and ultimately became a marathon runner.

**** Running ****

Why do I run? When I started running, I could barely run a lap on the track. I struggled to run a 5k. I pushed to run a 10k. I went for a run, continued for nine miles, so I decided to run a half marathon. I didn’t think I would finish, but I never gave up and each time that I ran farther, it made me hungry for more. I fell in love with running and I had to prove to myself that I could go farther. Some friends and even my mom were worried about me finishing a marathon, so I had to prove something to them.
When I got to high school, I became friends with Rachel in my English class who was deaf. She had a cochlear implant, spoke well, and did not use sign language. Most of the students knew this, but did not view her differently. She knew that I was deaf in one ear, so we had something in common.

**** “You Will Be Deaf!” ****

Nine years have passed; it is fall 2005. “I’m a senior! Class of ’06!” I’ve been waiting for this all of my life! I’m excited that I will go to college next year. Finally I will get to fly away. I am sad because this is my last season running on the high school cross-country team.
It is October 20, 2005. I stand in a long line at Hartsfield-Jackson Atlanta International Airport, and soon we are soaring to the sky. I am flying with my parents because I have doctor appointments in Boston, even though I would much rather be in Senior English, AP-Art, and even my awful Algebra III classes today. Boston is chilly with strong winds. We get a taxi from the airport and find where to go. At Harvard Medical Center, upstairs and down the hall, a large sign reads: “Massachusetts General Hospital - Neurofibromatosis - NF2 Clinic”. I check in at the desk and then sit down to wait. There are a few other chairs and an old lady knitting a blue blanket. I feel a little queasy. “Ann-ee Shi-t-gii-ley” (stupid people always say my name wrong), the nurse bellows to me from the door. She leads me to a room around the corner and tells me to wait. The doctor comes in. After looking over my files and MRI scans, she looks straight at me and says: “You might, well probably will, become deaf at some point in your life.” I am shocked. I can understand her perfectly. I respond, “Yeah, maybe when I’m 80!”
The doctor’s old golden retriever, a retired rescue dog, is in the office. Like a little child, I walk over and pet Madison’s soft coat, as if she can make my awful reality disappear. I am feeling sick, confused, mad, and betrayed. I have been punched in the guts. I think the doctor is crazy. Somehow, I have the knowledge to realize that even a friendly dog, cookies, or ice cream can’t ever take away the truth. My parents and I catch another taxi to Logan International Airport, and board a plane back to Atlanta. I am sitting in my seat on the plane and the engine is loud. I am really upset, and I don’t want to make a scene in front of all those strangers, so I write notes back and forth to my dad, who is sitting across the aisle from me, on my right. My mom’s tired head leans onto his left shoulder as she drifts off to sleep. I remember the conversation:
Me: I hate you! … My life sucks! … That doctor is crazy and wrong! … How would you feel if your doctor told you that? I’m not going to be deaf!
Dad: I’m sorry you feel that way. I understand that you are upset. I am too. I think that you will be okay. They could fix it with stem-cell research, if that happens in ten years.
Me: I hate you! … You knew this would happen! Why did you never tell me? You knew I’d become deaf! She said I’m going to be deaf! What the fuck? When?
Dad: Watch your language, kiddo. I knew that it was a possibility, but we didn’t talk about it because we didn’t want it to hold you back from accomplishing your dreams. I don’t know if that will happen or when. Maybe it will be years from now, after college, when you have a family, or when you are an old lady. You might want to go to the bathroom to wipe your tears and try to calm down.
Me: What if you were deaf? I think you would lose your job! How would you feel?
Dad: I would be very sad. …
Me: I still hate you! …
I was angry at the doctor, my family, even at God. I didn’t know what to do, so I left my seat to go sit in the back. In the plane’s tiny bathroom, I cried my eyes out, like streams go into rivers, forming the flow the creation of ponds and oceans. I vomited into the airplane toilet. My heart hurt deep inside.

**** Tears. Blood. Tumors. Senior Year. ****

I go back to school on Monday, still thinking about what the doctor told me. I try to keep my thoughts and emotions hidden as deep as I can. I usually wait until I get home from school to cry because I don’t want my friends to see. I have a hard time focusing on my classes.
Today is a mild day in late October. I can’t hold it back at my cross-country meet. I have just run as hard as I can in the Boling Park Invitational, but I have fallen twice and finish three minutes slower than last year. I am upset, not about the race, but about my life. I gulp down a little paper cup of Lemon-Lime Gatorade. I do not know that I have four stress fractures on both legs, but I feel the agony and anguishing pain of the grinding bone, along with strained muscles. I feel a pat on the shoulder; “good run,” my coach says. Blood streams from my knee down to my muddy sock, my face is red as a tomato with a small tear that rolls down my cheek. I limp across the damp lush green grass, a little into the edge of the dusky woods, just yards from my team, find a stump, sit down and cry. My shins hurt and my back aches, as if a thousand needles have stabbed me. I use ibuprofen because it helps a little with pain, but I am hurt; my heart is bleeding. I feel as though nobody can possibly understand what I am going through. Do people even know about NF2? Do they know about benign tumors on the spinal cord and auditory nerves? Do they know that I am hurt?
Two months later, the doctors gave me a steroid medication in hopes of saving my hearing. I returned to Boston on the second day of December. I had surgery two days later to remove the three tumors on my spinal cord that had been altering my running gait, causing a lot of physical and emotional pain during the last cross-country season. Thank God, that was successful and I could still run! As soon as I got discharged to leave, rather than going home, I was on a plane to California for another surgery. Two days later, the surgeon operated to decompress the auditory neuroma tumor of the eighth cranial nerve on the left side, which was caused by my rare genetic disorder. That surgery did not help. On Christmas Eve I had another one. I spent Christmas in a hospital room in Los Angeles where I could see the famous Hollywood sign from my window. My dad gave me a small white iPod wrapped in shiny gift-wrap; it was quickly exchanged for a portable DVD player and two movies: Forrest Gump and Four Minutes.
The New Year came, 2006. I was in a complete state of denial, because I was not ready to accept such a sudden and drastic change to my life. I had viewed myself as hearing, all of my life. I didn’t see that there could be anything in between. Just hearing and deaf. I could still hear a lot of sounds at that point, so I knew that meant I was not deaf. I figured I was hearing, even though I could not understand speech. I probably had tinnitus, which is a roaring sound in the ears. Suddenly, all communication had to be written. It was a strange transitional time for me. The only required course remaining for high school graduation was a quarter economics class, which I took with the help of a captionist who sat next to me with a laptop computer. I didn’t know anything about deaf people, culture, or sign language. So I began taking an American Sign Language class at a community college while I was still in high school, but I really was not emotionally ready for that. I went to deaf gatherings and introduced myself at a meeting of the Association of Late Deafened Adults at the Jimmy Carter Presidential Center. I felt like God was punishing me.

**** “Can You Read My Lips?” ****

Reality begins to sink in. I spend a lot more time alone now. I don’t know how to communicate with people that I love, so I pretty much take our dog Daisy running, hang out with the dog, and even talk to the dog. There are no communication problems between me and my dog; she loves me and I love her. If people do try to talk to me, it goes something like this:
Person 1: eifef ndjf ferf jkf geraf rfer pust dosesee fssdu sfed fhc? (cannot understand)
Me: Hi. How are you? Wait, what? (Tries to read lips, but the speech is too fast.)
Person 1: nefirbind. Arrr yru detvf orr sobethieg?
Me: Um…
Person 1: (turns away to talk to another person, and then looks back at me, laughing…)
Person 2: (slowly shouting) CCAANNN YOOUUU (points at me) RRREEEAADD MMMYY LLLIIIPPPSS??? (Person points at mouth, laughing, and looking at the other person.)
Me: *** I don’t know what to do, so I leave. ***

Don't laugh at me
Don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
Someday we'll all have perfect wings
Don't laugh at me

- Mark Wills

**** Maryville College ****

It is the middle of August and I’m packing my things to leave home and go to college. I have been accepted at my first choice, Maryville College, a small Presbyterian college located in the foothills of the Smoky Mountains in eastern Tennessee. A month ago, I got a letter in the mail: “Congratulations! You have been selected for the Church and Leadership Scholarship!” Mom jumped up and down, she was so excited. The school offers sign language classes, so I will take that. Before I lost my hearing, my parents thought Maryville would be a good choice for me since they knew there was a chance I would become deaf at some point in my life, but hoped medicine would advance before that happened. They never imagined I’d be deaf before I finished high school. They thought I could go there and learn sign language while in a normal college setting, just in case I ever did become deaf. I haven’t even started college yet and my ability to understand speech is already lost. I do not understand why God chooses this fate for me, but I pray for a miracle that He can make my hearing come back. At least, I’ll get to run cross-country again! I will enjoy my time at Maryville, although communications will often be bitterly frustrating. I see friends laugh, but what is so funny? What? “Never mind”, they say.
They are my friends, but they don’t know that they hurt me. “Never mind”, “It doesn’t matter.”, “I’ll tell you later,” is so frustrating. I want to know! They talk too fast for me to understand anything they say, but just a few months ago, I could understand that fine. I’m having dangerous thoughts, but I don’t have the courage to attempt anything serious. What is happening to me? Who am I? What have I become?
Maryville would have been an ideal small liberal arts college for me if I were still hearing. I took the first class in ASL, but no one wanted to practice out of class, so I didn’t progress very fast. I made a lot of friends even though communication was difficult, volunteered at a small church, and ran on the NCAA-Division III Women’s Cross Country Team.

**** “Suck It Up!” ****

By a year later, 2007, I realized that I really am deaf. On January 29^th, I received a letter via snail mail, informing me that I needed to have surgery again because that same tumor had grown more. I knew that when I woke up, I would hear no sounds, but I didn’t know what total silence would be like. At the same time that I had that tumor removed, I also got an Auditory Brainstem Implant (ABI). It is similar in concept to a cochlear implant, but works differently. It has fewer sounds, and is made for people with detached auditory nerves. I was scared but I sucked it up, just like my cross-country coach always had told me to do, when I ran hill repeats or speed intervals. No pain, no gain. “Ya aint gonna get nowhere in life, if ya don’t learn to suck it up.” Complain about heat, cold, injury, or fatigue and coach yelled “suck it up!” My doctors said that it had to be done, or I could die from the tumor’s pressure onto my brainstem, so I bit my tongue and sucked it up.
It was a tough decision but I decided not to return to Maryville. I felt like my deafness and the people around me formed a tall brick wall and I was a little bird with clipped wings. There is a world of opportunities on the other side of the wall, where I was before my wings were clipped and the wall was built. I wanted to move on in life not dwell on my loss. I researched and found out about RIT/NTID and the large deaf population in Rochester. I talked to a few students that I found through friends in a Facebook group, and they were helpful. Having lived all my life in the deep South, wearing flip flops to school most of the winter and seldom seeing a snowflake, I imagined freezing to death in New York. I talked to my parents about it, and we all came to visit during my spring break. I saw hands flying everywhere and only understood a little of it, but for some reason it seemed right. I met up with some friends I had met though a Facebook group, more cool people, and visited the deaf Bible study which was amazing.

**** 26.2 Miles ****

After visiting RIT, I returned to Atlanta to run the ING Georgia Marathon, my first full marathon, with the Children’s Tumor Foundation NF Marathon Team. Five girls from my Bible study group at Maryville drove down from Tennessee to cheer me along the route and joined my family for lunch afterward. A photo shows my fans all in bright yellow t-shirts and mom waving her big South Carolina flag; I stand smiling, sweaty, tired, wearing my big marathon medal around my neck. I felt great accomplishment and happy that I finished. I felt sore, tired, and wondered how I would make it up four flights of stairs to my writing class the next morning. I returned to Maryville for just a couple of days after the marathon to pack up my stuff and move out of the dormitory before flying across the country.

**** Eating Jell-o In Silence ****

Today is April 2, 2007. I am on a plane flying to Los Angeles, California. My parents, Ken, and his girlfriend Nicole are with me. Tonight we will go to Santa Monica Pier, hang out, go run and get dinner. Tomorrow morning, I will check in to House Ear Institute / St. Vincent’s Hospital, because I have to get a lot of tests, EKG, blood work, even another damn hearing test, and have surgery the day after that. I wish I could fly away.
Two days later, the day I dread is here. I glance at my Timex watch; it reads “5:02AM. – APR. 4.” I ran my first marathon just ten days ago, but now I am told I will not be allowed to run until the middle of May. I’m thirsty, but I am not allowed to eat or drink anything now. I’m scared, but I act mature and courageous.
“It is another surgery, just another damn tumor,” I think to myself. I am rushed early in the morning, as I hear the sounds around me. The sounds sink in. I remember how things sounded before last year, and I know how they sound now. My parents and I go sit in the waiting room. A nurse walks up to me and directs me to a desk. She holds a stack of papers, and then points to where I need to sign. I sign my full name on the line below the long paper, which I don’t bother to read. I already know that it is about the surgery and death warnings. She straps a plastic bracelet with my name and numbers printed on it, while she continues to talk to my parents. I sit, fumble, and observe my surroundings. There are chairs, people, and that strange scent of blood, cleaning spray, and bactericide soaps. Dad writes notes to me; he tells me to not be scared. Soon I am lying on a stretcher, wearing another hospital gown and the weird no-slip socks. I am still scared as I grasp my mom’s hand for comfort; I try to remain calm. She lets go, after the surgeon shaves half of my hair off. He gives me a shot, and I fall asleep.
Many hours later, I wake up. I am groggy with drugs and wired to machines. My head hurts; a white gauzy bandage that looks like a large turban is wrapped really tight around my head. I hear sounds, but I soon realize those sounds are not real. The sound is silence; now I know what silence sounds like. Silence sounds like static, but sounds can be felt by vibrations. I have been told that silence is golden, calm, peaceful, a sanctuary, holy. Wrong! Silence is dark, empty, mute, speechless, scary, sulky, and black like death.
Tomorrow I will move from ICU to my own room and eat real hospital food, not just urine-colored lemon-flavored sugar-free Jell-O. I hate Jell-O! I continue to improve. I am mad when I see the signs outside my door; one says “FALL PRECAUTIONS” and the other “HEARING IMPAIRED.” I get a huge pile of get well cards! I am so drugged that I manage to start speed-walking laps around the nurse’s station two days before the rehab person brings a walker to my door, which I refuse to use. I am a marathon runner, so I will not touch that walker; I am deaf, but I am strong. I am independent, always independent, just like the “Miss Independent” award I got when I was in pre-school.
Two weeks later, I was back at home in Atlanta. I slept a lot, ate a lot, felt sad, and wondered, “Why am I deaf?” Sometimes I slept all day, and then went downstairs, where I slept more, watched television, text messaged, and daydreamed – all day. As soon as I was allowed to drive again, I went to visit my friends at Maryville College. They ran over and hugged me so tight, it was like they wanted to break my ribs! I was very happy to see them. Some asked me silly questions like, “Can you hear?” I wanted to fly away.
I became eager to run, but I was told to wait. I took the dog for walks, and by the next week, the dog walks had greatly increased in length. I was surrounded by sounds, but all I could hear was silence. When I saw people talk, there was only the sound of silence. This was my life, a silenced marathon.
It was the beginning of May 2007, and my long walks became walking, then jogging. It did not hurt; it felt good, so I kept going. Within a few days, I got in trouble, because I was not allowed to be running yet. My dad looked angry as he quickly scribbled notes to me.
Dad: Were you running?
Me: (shakes head, no)
Dad: Jogging? Why is your shirt wet?
Me: It is hot outside.
Dad: If you run, before your doctor says you can, you could displace the electrodes in your implant. You MUST let it heal! If you ruin it, they cannot fix it! You will NEVER hear anything! You may have already caused a LOT of damage! Do you understand?
I was angry. I probably slammed the door, a silent slam to me. I went to the bathroom. I cried, silently. I knew I jogged a little but I didn’t know it could harm the ABI. I wondered why he had not told me that. Inside of me, I was scared. I was told I had ruined my expensive implant. I waited two weeks before I was allowed to run; I waited two months before I knew if jogging a few miles had ruined my ABI. I wanted to fly away.

**** New Sounds ****

Two months have trickled by. Today is June 6^th, the day after my 20^th birthday. I flew back to California yesterday, and now I am sitting in a waiting room with my mom. We are eager to see if and how my implant will work. Little butterflies flutter in my stomach. I am nervous, scared, maybe excited. The audiologist finds me and leads me to a small room with three chairs and an old PC computer. He shaves a one inch circle on my head, just behind the ear, and attaches a small sticker that has a metal disc in it. I get hooked up. How strange to have a plastic thing hooked over my ear and a small disc on my head with another wire coming down from that to the processor. I sit and wait as the audiologist presses buttons; suddenly I hear “BEEP!” I have never been so eager in all of my life to listen for a little “beep.” Whoa, that is loud! Loud, quiet, high pitch, low pitch, all of the sounds are different, all ten of them. I hear my audiologist and my mom speak, but I cannot comprehend the sounds.
Audiologist: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, baseball, hotdog, airplane.
Mom: Hi, sweetie. Can you hear me?
Me: Um, you sound like a…. a…. a…. dying cow and a sick frog!
Mom laughs; she looks a bit horrified, but the audiologist explains that it will take time for me to get used to it. I immediately think that I will not use it, because I cannot comprehend any of these sounds.
It has been a week since I got my implant turned on. I will now go to be a counselor at my church’s summer camp for high school students. This is my sixth year of camp, second year being a counselor. I fear communication problems, but I know I will have fun.
From my camp journal:
June 16, 2007
Dear God,
Sometimes I want to think that I am strong, but really I know that you are strong and I am weak. Please Lord; help me to hear your voice calling to me, and to recognize it, even though communication with others can be difficult. I got this new ABI turned on just a little over a week ago, because now I am deaf. Maybe I need your help with accepting that reality? Or have I already? I am not sure. Anyways, when I turn on my ABI, I can hear sounds, and maybe I will be able to understand more than in the silence. Perhaps I can better hear your words without it? I want to hear my friends, too. If many are talking, the sounds are much more confusing. Where should I go in life? Please listen and call to me; help me to hear you! Allow me courage to fly.
- Me
My prayer partner, Juliana, and other awesome friends patiently repeated things, wrote notes, and learned to fingerspell, which meant a lot to me. They went that extra mile to write notes like they would for classes, for a counselor meeting, evening speaker’s story, or which song we were on. They wanted to make sure I didn’t miss anything; they helped a lot. I decided to give the ABI a chance, even though some people seemed to think it was magic hearing plastic.

Dance as though no one is watching you.

Love as though you have never been hurt.

Sing as though no one can hear you.

Live as though heaven is on earth.

- Souza

**** Epilogue****

**** Acceptance And Flying At RIT / NTID ****

I decided to transfer to RIT. Since coming here in the fall, I have made a lot of friends, improved my signing, as well as lip-reading / listening with ABI, and learned more than I had ever imagined. My time here thus far has helped me to change for the better and has helped me begin to accept myself for who I am. I still run, perhaps I run to escape the world or for the thrill. If you wonder what I am running from, it’s nothing, really. Now, I am not stuck in a shell. I believe in myself. I believe I can really fly...

I believe I can fly

I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

- R. Kelly

My Experience with NF2

My name is Bonnie, I'm 24 years old, and I was diagnosed with NF2 when I was twelve.

I was in the midst of puberty, that awful, confusing period where things just start happening to your body and you have no idea how to stop it or control it. Puberty hit me pretty hard. My hair was frizzy and I needed braces and I just had that feeling and look of awkwardness. While the other girls in my grade all seemed to be perfect, with shiny hair and straight smiles, I was the freak with Sideshow Bob hair.

As if puberty isn't bad enough, not long after I got my first period, I started experiencing discomfort, twinges mostly, in my right thigh. We were on vacation at the time and I mostly ignored them, thinking I had pulled a muscle in gym. Eventually, though, the twinges became less annoying and more debilitating and I told my parents. I was taken to a doctor, where he diagnosed me with scoliosis and prescribed an MRI.

I was terrified. I was twelve years old and my mom patiently explained to me that I would be going in a tube for an hour that was loud and it seemed like the end of the world. To me, my first MRI experience felt like being trapped in a coffin--a white, incredibly LOUD, coffin. The only upside was at least I got to listen to music.

A few weeks later, the doctor called my parents with a diagnosis. I had neurofibromatosis type 2, or NF2, as us cool kids call it. I didn't understand the connotations at first. My parents sat me down and explained but all I heard was a lot of medical jargon that made no sense to my addled preteen mind. I just wanted to watch Buffy the Vampire Slayer, thank you.

It wasn't until a year later that the reality of the situation hit me. I was 13, we were in the pediatrician's office for a checkup, and my dad mentioned I had tumors. In my mind, tumors equaled certain death. I cried all night until I was reassured that they were benign and weren't terminal and as long as they were watched closely, I would be fine.

I had my first NF2-related surgery that year. Previously, my only two experiences with the hospital was when I was 3 and had to get my appendix out and when I was 9 and 30 lb weights fell on my fingers, requiring surgery. So this was a pretty big deal for me. I had to have spinal surgery, as one of the fourteen tumors there was pressing on my nerve, causing pain. I was in the 7th grade and I had to be homeschooled for 3 months. At first, this seemed, well, awesome. I wouldn't have to wake up at 6 am anymore! No more immature classmates throwing stuff at me and making fun of me for being awkward. Success!

After awhile, though, this situation became quite lonely. I was in the hospital for a week recuperating from surgery. My roommate was an 8 year old boy who had just had brain surgery. It was terrifying for me. My mom stayed with me the entire time, sleeping in a hard-backed nylon chair. I was 13 and the idea of staying in the big, bad hospital alone was unfathomable. This was Columbia Presbyterian, a hospital that would come to mean hell in my eyes.

As the years went on, I needed to have a few more surgeries, but the NF was mostly an annoyance. At 14, I had my first brain surgery, which took the hearing from my right ear. THe doctors said it would come back eventually, which obviously never transpired. I would have to miss a lot of classes because I wasn't feeling well, or I had a doctor's appointment in the City, but other than that, life was relatively normal.

It wasn't until after I graduated that things took a turn for the worse. I had spinal surgery right after graduation and, a month later, I came down with meningitis as a direct result, an infection. That took the hearing in my other ear. Suddenly I was 18 and deaf. I couldn't hear my friends when they would call on the phone to check up on me. I couldn't hear the doctors. I couldn't hear music. My entire life was derailed.

While I was at the hospital, there was a lot of screw-ups. For 4 days, the doctors had no idea what was wrong with me so I remained in the ER all that time. When they finally figured it out, I was, among other things, forced to wake up at 2am for a CT scan that, as it turns out, I didn;'t need; the results weren't given to us until n oon the following day, after my dad complained countless times. I had a pick line inserted (like an IV inside the body) and I was told I would be under anasthesia and not to eat all day. I didn't, and no anasthesia. My back kept opening up , leaking spinal fluid, because they told me nhot to lay on anything hard then promptly put me on a cold, HARD, metal examining table.

My parents wanted to sue for malpractice. Our lawyer said we didn't have a case so we just switched hospitals. I now go to NYU Medical Center. My doctor is John Roland and he's been caring for me for the past six years.

I have an ABI, but it doesn't work; it abruptly quit on me 3 weeks after I got it. For 5 years, I pretty much did nothing but laze around the house, crying because a lot of my friends had abandoned me, and I felt very alone. Then came RIT.

I was 23 and a Freshman at RIT/NTID, the National Instutite for the Deaf. Suddenly, I had so many experiences that were lacking in my life before. I made friends. I fell in love (with an awful excuse for a human being but that is neither here nor there). But still, the NF haunted me. In 2008, I had major brain surgery to remove a tumor and, as the brain controls everything, for months I couldn't even walk myself. I had to use a walker, a wheelchair. My hand shook terribly. Now I have mostly recovered but I still have issues with balance. I trip over air, and not in that adorably klutzy Twilightish way either. I can't walk in a straight line, making me appear intoxicated all the time. the vision in my right eye is blurry and the eye is very sensitive. Just the slightest irritation will turn it beat red. It...well, it sucks.

My biggest fear is that I won't find someone to share my life with because of my condition. My last boyfriend said he understood then did everything wrong and couldn't cope. I'm 24 and most of my friends are either engaged, married, and/or parents, and I don't want to miss out on all of those wonderful things because of the NF. Most people have large goals--to be CEO of a company or have riches and fame. All I want...is to be happy.

Thank you...

Thank you to the father who took me to that first cross country practice at 6:30am and who sat in his car, watching me struggle to run half a lap on the track.

Thank you to the mother who has always been my #1 cheerleader, but I know she had some doubt and fear about me finishing my first marathon.

Thank you to the student who once told me that he didn't think I would still be able to ride a bike, due to my loss of balance. That week I bought a cheap new bike.

Thank you to the NTID faculty person who I understood to have had told me that she thought I was too smart for those classes.

Thank you to all of the coaches I've had through six years of cross country and three years of track, but I thank one most of all, my first running coach.

Thank you to the endurance team that has supported me through everything, even though we are too spread apart to actually train together.

Thank you to the doctor who took some junk out of my back, sewed me up, asked how I was feeling and laughed when I said okay and then puked on his shoes.

Thank you to the friend who I met through facebook.com, before I came to RIT, and helped me realize who I am, even if she was blunt or harsh, I love you.

Thank you to the running club that patiently waits for every single person to finish every group training run and every race.

Thank you to the wonderful family who has opened their home to me and a group of amazing young ladies, numerous times, even though I'm always causing trouble.

Thank you to the NF doctor at Harvard who told me that I really should not swim at all, especially in open waters, due to my loss of balance. With caution, I ignored.

Thank you to my long time best friend, who has always been there for me, through the thick and the thin.

Thank you to the teacher who when I brought in a 23-page memoir draft for a 15-page assignment, told me I ought to write book, but I basically need to start over.

Thank you to the random people who have asked me how far I've ever run and when they get an answer, their jaws hit the floor and they called me insane.

Thank you to the doctors who have dealt with me, cut open my head - on numerous occasions, and gave me my ABI, so I can "hear" again.

Thank you to the wonder boy, my fiance, who always makes me feel like the most beautiful woman and loves me no matter what.

Thank you to everyone else who has made any impact on my life.

Thank you to God for making my life wonderful and continuing to do so!

I Would Still Run

If I found out tomorrow that my son was misdiagnosed--that there was another explanation-- I would still run. I know because of the people I have met. I see the look in the eyes of mothers whose children suffer from NF, and I think, "I must look like that to other people." Until there is an answer to all the questions. I will run.

For my daughter, Shannon...

For my daughter Shannon, who was diagnosed with NF2 in 2002.

I remember leaving home the day you were born. I thought, things will never be the same, and they weren’t.

What love, hope, inspiration and happiness you have brought into my life. I would walk into your nursery and you were always happy, smiling and reaching up to grab life with all the joys it can bring. That love of life and your ability to see good in all things around you has helped you and especially me deal with NF2.

Even in the face of adversity and illness you move forward with courage. You always find the positive side to the ravages NF2 causes to your body.  You have taught me so much and give me the strength to face what lies ahead. 

When NF2 took your hearing and you could no longer sing, you didn’t give up. You used your eyes to photograph all of the beauty you used to sing about.

When NF2 took your sight, you didn’t think of it as an ending but a beginning to teaching and helping others by showing them that no matter what their differences, or handicaps they are to be valued and can be productive members of society. 

Neither of us knows what lies ahead but together we can get through anything NF2 throws our way.  We will always move forward, always look up and embrace what NF2 can never take from us: OUR LOVE.

If I could take your pain away and have the NF2 instead of you I would.  I am always here for you. You are my hero.

My daughter, my hero

Our baby girl was perfect, simply perfect.

The first clues of NF2 were subtle. She was a little late to talk inteligibly and required some speech therapy, but it was no big deal. When she started taking ballet with her friends at three, motivated mainly by the pink tutu, the first task was to hop on one foot. When she couldn’t do that, she practiced alone in her room for a week until she came out gleefully hopping on one foot for laps around the house. Looking back, I realize there was an NF2 tumor already working on her.

Me and my daughter, my hero
Me looking on as Destin guards Anne - '87
After her 4th marathon- NYC '10

            When she entered first grade we had a parent conference about the termination of speech therapy as she no longer needed it. The counselor said something about her having done fine on a hearing screening test. My mind went back to the times I would call home from business trips. Sometimes when I talked with her we had a good daddy-daughter conversation, but sometimes it was like cross questions and crooked answers, as if she didn’t hear m
e. I said, “just a minute, let’s talk about that.” To follow up we scheduled a hearing test with an audiologist who at long last determined she was faking out the test, giving appropriate responses for the “bad” ear when she felt a vibration through the bone. This led to an MRI.

            In the early nineties, I carried a pager rather than a cell phone. I remember where I was when I got the page, and the pay phone I used to call my wife, and the window I was looking out when we got the news that our perfect child had “neurofibromatosis type 2,” something I had never heard of.

            Over the next week, I did what I do. I researched. Somehow I found Dr. MacCollin at Harvard and talked with her by phone. She told me there is wisdom in “watchful waiting,” and to always seek second and third opinions before any surgery. She said that the worst outcomes she saw were when doctors who knew litte about NF  saw a tumor and felt that had to immediately cut it out right away. So we watched and waited.

            It was nearly two years later, on a Saturday morning in the middle of the Atlanta Olympics. We had tickets for some of the events, though none of the really “hot tickets.” My little girl, a Brownie looking forward to third grade, came down to Saturday our family pancake breakfast with one side of her face distorted. At first I thought she was just goofing around. After a few minutes we realized that the tumor the doctors had been watching was affecting a facial motor nerve. On Monday morning I was on the phone to Dr. MacCollin at Harvard. She gave me a short list of surgeons who had enough familiarity with NF2 to consider, and I started calling. Someone from South America cancelled a scheduled surgery at House Ear Institute and within two weeks we were on a plane to see Dr. Brackman in Los Angeles.

            In scheduling surgery I had a long talk with a nurse at House Ear. I asked her what to expect. She told me as kindly as she could of the sad outcomes they too often saw with NF2 patients. I recall laying across the bed, a hardened middle aged man, crying my heart out for my little girl, then pulling it together to put up a cheerful front for her. She later admitted that she was afraid she was going to die. So was her little brother who went to stay with cousins.  

            In LA, the doctors told us that they expected it would be necessary to sever her facial motor nerve, and that she would never smile again on that side of her face. Maybe in a few years she could hold her mouth straight. That night before surgery we prayed. I got on the phone with cousins across the country and we prayed together. In the morning, before surgery, I got a container of salad oil from the cafeteria and followed the directions in James 5. All through the day I prayed.

            When she woke up in ICU, she was grinning from ear to ear and asking for a hot dog. The other ICU patients had unbearable nausea and couldn’t bear the thought of hot dogs.

            The next decade was often an ordeal. She returned to her elementary school bloated by steroids with hair combed over the shaved side of her head. Mean kids ostracized her and friends didn’t know how to come to her aid. We kept seeking the best advice and moved her from one school to another seeking the best fit. By 7^th and 8^th grades she was at a very small school for kids with learning differences, where she began to thrive. However, she insisted on going to a “regular high school.” She chose a visual arts magnet program at a high school a few miles from home. At freshman orientation our chubby little girl asked what were the no-cut sports, and signed up for cross country, swim team and track. After driving her to the first morning of cross country practice at 6:30 AM, I sat in the car and watched as she struggled to run half a lap. Little did I suspect that she would become a marathoner and triathlete.

            The summer before her senior year, her doctor said the tumors on her spinal cord and in her “good” ear had grown. It was time to get something done about them. He thought she could get past her senior season in cross country first. During the fall it appeared that her gait was thrown off by the spinal cord tumors. She ran several meets with stress fractures in both tibias and both fibulas before she finally had to stop. (At the end of the season she received a special award for courage.) In October we flew to Boston where Dr. MacCollin told her that someday she would become deaf though probably not right away. My little girls said, “yeah, maybe when I’m 80,” but had trouble hearing us talking to her at the art museum afterward. She wept silently on the flight home. Her hearing grew fuzzier over the next few weeks.

            The day we flew back to Boston for surgery on her spinal cord tumors, her hearing blinked out. We were reduced, for the first time, to communicating by writing on a whiteboard. While Dr. Coumans was skillfully removing spinal cord tumors we were on the phone to House Ear Institute scheduling surgery to decompress the tumor pressing on the auditory nerve of what had been her “good” ear. As soon as she  was released to travel we flew directly to LA. At that point she had 4% speech recognition. Decompression surgery was attempted right before Christmas. We would have Christmas in the hospital, so we flew her brother in from Atlanta and I bought a tacky metal Christmas tree for her hospital room. She got a staph infection in her back that scared us and the doctors to death.  We remained in LA until after New Year’s Day and for the first time sought out theaters with captioned movies.

            My daughter returned for her last semester of high school using a captionist in the one remaining academic course required for graduation and began taking ASL at a community college in the afternoons. She insisted on running before it was permitted, rebelled at restrictions on driving until we could get her checked out by a hospital program that clears people to drive after medical situations, and within a few weeks drove herself to a meeting of the Association of Late Deafened Adults. Her college choice quickly narrowed to Maryville in Tennessee, which has a deaf studies program and a spot for her on the cross country team. She began networking with other young folks with NF2 through the new technology of Facebook, and never slowed down.

            The following fall, she had to be at Maryville for a cross country team meeting at the end of the day of my mom’s 80^th birthday luncheon. I had just gotten up to talk to the assembled family and friends when my little deafened girl came up, gave me a hug and a kiss, and walked out to drive away to college. That was the second time I cried.

            Through her freshman year of college, communication with doctors did not stop. We were advised that she could not wait til summer for surgery to remove the tumor in what had been her “good” ear and install an ABI, as there was severe risk of facial paralysis if she waited. During her spring break we visited RIT / NTID in Rochester, then she ran her first full marathon in Atlanta with a crew of girls from her dorm at Maryville turning up to cheer her on. Then we all flew to LA again for yet another operation, taking along our high school senior son and his then-girlfriend to spend their spring break exploring LA together. Little did we know that he would wind up spending several years in the LA area.

            Some people who lose hearing at 18 crawl into a hole, but she never slowed down. As soon as her ABI was turned on, she went to DC for the summer for a crash course in ASL at Gallaudet, going for long runs all over the nation’s capital, and then transferred to RIT/NTID at Rochester. She never really moved back home after that. The next summer she worked at Blue Ridge YMCA Assembly in NC, the following summer at YMCA of the Rockies in Colorado, then at a camp in Pennsylvania, followed by a summer in school at Rochester. She never slowed down in her running, completing several marathons. On a Campus Crusade for Christ spring break trip, she connected with a great guy who was supposed to interpret for the deaf girl. He said she didn’t need help but they had fun. He proposed at the finish line of her first triathlon this summer, and a couple of months later they completed a Half Ironman Triathlon together. (How can anyone ride 56 miles on a bike with no balance nerves?) Drilling daily on speech recognition with her ABI, she now has over 90% speech recognition without seeing the speaker using the ABI alone, and we can have telephone conversations again.

            My little girl who taught herself to hop on one foot despite lack of balance when she was three, and who drove herself to the Association of Late Deafened Adults when she was a newly deaf high school senior, has no “quit” in her.

She is my hero.

           

A Tribute to the Parents of NF

It all began with “coffee” marks on my precious new baby’s otherwise perfect skin.
When the doctor said Neurofibromatosis, we entered a new world.
We didn’t ask to go to this new place. We didn’t buy plane tickets or get a triptik.
But we got there nonetheless.
...In this new world there were things we’d never heard before.
There were bone abnormalities called dysplasias, bowing, pseudoarthrosis, scoliosis…
There were tumors called plexiforms, neurofibromas, gliomas, astrocytomas…
Learning disabilities and developmental delays opened us up to things we knew existed, but never thought we’d experience.
Things like special ed, speech therapy, occupational therapy, physical therapy, social skills groups, CSE, IEP...
And there were tests.
Many kinds of tests: MRI, EKG, EEG, Neuropsychological, CT scans, x-rays, and the dreaded pathology reports.
Our lives hung on the news from those tests every three to six months, if we were lucky, every year.
It was a scary new world because you never could know what to expect.
The doctors all said, “Wait and see”.
It was all they could say. They didn’t know what the future would hold.
We learned to study statistics and pin all of our hopes on them.
Numbers and percentage signs, such powerful things in this world.
Prognosis was not a word in the vocabulary of NF doctors.
The doctors…
They were scarce and we had to search them out.
They weren’t always in our neighborhoods.
Often we traveled distances to find them.
They were specialists who we revered and respected.
There were Neurologists, Orthopods, Neuro Opthamologists, Radiologists, Anesthesiologists, Neuropsychologists, Oncologists, Cardiologists…
We hung on their every word in hopes that this time it would be good news.
We set up websites to share this news because telling the stories again and again became exhausting.
In this world we learned so many lessons.
We learned to look at our children in a different light.
We learned to cherish every moment even the impossible ones.
We learned to hug them and kiss them until they couldn’t stand it anymore.
We learned that they wouldn’t always be given the opportunities we used to take for granted.
We learned not to take anything for granted.
We learned how powerful a child’s smile could be.
And some of us learned how to say goodbye long before we were ready to.
Others learned how to console and many of us learned the power of prayer.
We learned to have faith because we couldn’t cope without God, an almighty power capable of such enormous things.
We learned to advocate, educate ourselves and others, raise money and awareness.
Our lives were changed forever.
But that wasn’t what we couldn’t handle.
Our children’s lives were altered to a degree of which we could not be certain.
Not knowing.
That was the part of this new world that consumed us with fear, got us on our knees to pray and that clung to every fiber of our being from the day we entered the world of NF to they day we leave it.
And when the cure is found, we can rest.
By Jesse's Mom

ELLIE RANEY

I am not a poet nor am I an author which will be evident when you read this. However my love for my adopted daughter is intense. Our coming to grips with her NF have tested my faith and my sanity. The NF friends I have made have a very special spot in my heart and a special place in my prayers. I must mention Mira here- my almost 19 year old, she picks up the pieces of me and keeps me together.

ELLIE RANEY

She is too young to run a marathon

She is too fragile to ride a bike

Her friendship is free to all

There is no one she doesn't like

Only two hundred and ninty miles

Most of it in the fast lane

Leaving home before the sun is up

Never does she complain

The St. Louis Arch to many

Is beautiful, awesome and bright

Unless you are a little girl that knows

It means the end is in sight

Her waist is 18 inches

Her first scar is over half of that

She sweetly thanked her Doctors

When they stopped by to chat

Ellie came as a foster child

When she was little more than two

I am humbled God chose me to watch her

And I know he will see us through

We adopted her when she was five

She has won many hearts in town

Every shot, stick, poke she gets

Nothing brings this little girl down.

Little Brother

Here are the lyrics to the song "Little Brother" written by Ben, for his brother Drew. Drew has
schwannomatosis, the rarest form of NF. It speaks to the unrelenting pain Drew and others with schwannomatosis cope with every day.

Verse 1:
Little brother don't be afraid
this pain will be gone one day
little brother I'm by your side
I'll help you to endure this fight
you are so strong and yet you are so weak
you'll overcome determined to succeed

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)

Verse 2:
Little brother don't shed a tear
you've got the strength to persevere
little brother I pray for peace
and ask a cure for this disease
now lead them on the world is in your hands
they'll follow you now give them your commands

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

Hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)

NF never sleeps......

NF Endurance - Atlanta 13.1 - 2011

NF never sleeps.......


NF never sleeps so when 3:00am came along on our 12th wedding anniversary it was time to hit the pavement. We went out to Atlanta 13.1 to set up our hydration station to go spread some NF awareness.

So if NF never sleeps......... neither will we.

CURE NF2! Contributed with permission by: Kim G.

This is Devon, the son of a friend of mine, Kim. Devon has NF2, like myself, and he is a first generation spontaneous mutation (That means no parent or grandparent had it.) and required surgery for large meningioma at age 5. 

I immediately loved this picture when I saw it and sent a message to ask if I can use it for this project blog and she said that would be fine. :-)

"Devon also runs, he just qualified for his schools cross country team and is only 9 with some disabilities from his NF2, we are very proud of him!" - Devon's mom, Kim.

Devon, age 9- has NF2

"Making a Difference... for NF." - Contributed with permission by Julia S.

Originally posted as a "note" on Facebook.com by Julia, on March 21, 2010

Julia- I glanced through your pictures, and there were plenty of great ones of you wearing neon yellow and running for NF, but I liked this one of you, for it's unique adventure and daring look!  :)

Posted from perspective of Julia, and the part after intro by her husband, Ralph. (also mentions their daughter, Jessica- college age, I think.)

Ralph was asked to write something about me....for a friend.... not sure what this friend is up to, but here is what he wrote.

Although many are not mentioned in this note I've put you here because you were all on that initial journey, helping me out on those long runs, or the short ones.... and I thank you.....

And I apologize if I have left anyone out... heading out the door so I haven't had time to check...

How can I make a difference. What can I do that will bring about a change to the way I live with this disorder, for those suffering with this disorder and ultimately solve the genetic puzzle that is NF (and for the uninitiated that NeuroFibromatosis).

This is the short story of Julia, my wife (I guess Dave would substitute my friend) and her continuing journey of life with NF.

NF was for many years just something she and I lived with. The ticking time bomb that might never go off but frequently "fizzed" with some alarming conditions. Being genetic there is a 50/50 chance that our children would have NF. We have one child - Jessica - she also has NF. As they say in Vegas - you roll a 7 and you crap out. For us it was 1 and done. That was 1986 and very little if anything was known about NF, especially in Australia.

In 1990, we moved to the United States of America. Julia quickly found out that NF was much better understood in the USA and had very active organizations supporting those with NF and especially for funding research into a cure for NF. Throughout the 90s it was not much more than just the annual checkup for Julia & Jessica - simple stuff like head & spine MRIs to check for tumors which if detected there tend to be shall we say "life changing"

The internet comes of age in the late 90s - and Julia finds many sites dedicated to NF - but the message tended to be the same "woe is me, NF has ruined my life". Not to downplay the seriousness of the problems the disorder can cause (such as learning difficulties, fine motor skills & coordination (try catching a ball or riding a bike without them), blindness, deafness and a host of others) but for Julia it seemed that nothing was being done and she wanted to "do something".

Do something translated to running.

There's a scene in the movie Forrest Gump where Forrest says "... My momma always said you can tell a lot about a person by their shoes, where they're going, where they've been. I've worn lots of shoes, I bet if I think about it real hard I can remember my first pair of shoes..."

Well I'm here to say that Julia has worn (out) a lot of running shoes. And I mean a lot of running shoes! It was the year 2000 and Julia began training to run the Dallas White Rock marathon late in the year. Having proved to herself that she had "the stuff" to run a full marathon her next objective was to run her first marathon for NF at San Deigo in 2001. In the USA, events such as city marathons, tend to big fundraisers. This was Julia's first fundraising effort for NF and raised over $5,000. We passed the hat around to friends and their generosity was outstanding. It was in San Deigo that Julia met Steve Kendra and Bob Scold and NF marathon racing team bloomed.

San Deigo 2001 was followed by NF marathons in Chicago 2001, Alaska 2002, Vancouver 2003, Virigina Beach 2004, Nashville 2005, Las Vegas 2005, Alaska (again) 2006 & Phoenix 2007. Roughly speaking her efforts were supported by generous donations totalling in excess of $40,000 to the cause of the Childrens Tumor Foundation, dedicated to research to "Solving the NF Puzzle".

In between those marathon efforts, we were also dealt some "life challenges"

2001 - surgery for Julia for an unpronouceable tumor that needed to removed from her adrenal glands (which if not removed properly would ensure death if she were to have a general anesthetic).

2003 - Julia has a spinal tumor - major surgey on spine T2-T4

2003 - Jessica (aged 16) diagnosed with a brain stem tumor!!! That will ruin your day. Thank God for Dallas Childrens hospital

2004 - Julia pre-cancerous esophageal cancer ... another day ruiner...

As one souvenir from Julia's marathons succintly says "Can't run from NF,... can run for NF!" And run she has!

And here we are back in Australia and after a 2 year hiatus, Julia has successfully staged her first "Coastal Run for NF" raising over $2,800 for the Neurofibromatosis Association of Australia (NFAA) Inc.

Her plans are to launch this event as the "Neuro-Enduro Challenge" raising the awareness of NF in the community and supprtoing the NFAA through the generous contributions of individuals and businesses.

What can you do to make a difference. Lots of things. This has been one of them

My 1st 70.3 Ironman - www.nfendurance.org

Just a few of the many pictures, so I posted one from each discipline- swim 1.2 miles, bike 56 miles, then run 13.1 miles... 

Poem by Holly A., May 3, 2011

NEUROFIBROMATOSIS


NF is a genetic disorder that
Enables tumors to grow like weeds.
Upon the skin-- NF1,
Ravaging the nervous system-- NF2,
Or a combination of both.
Fighting this disease
Is draining in body and spirit.
Because it's not considered cancer,
Rarely do people take notice.
Oh, if they only knew.
Malignancy isn't the worst that can happen.
Abilities lost one by one,
The painful ugly tumors on the skin,
Or going deaf and blind or becoming paralyzed.
Suffering for many years with few treatment options until death finally comes.
It needs awareness and funding for more research.
Spread the word and help us cure NF!

graphics by Sarah G. :)