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.  

Daddy said it was a space shuttle...

Been there done that

at least once per year

since I was seven

Dad first told me

it was a space shuttle

I got excited-

A ride to the moon

Mommy drove me 

to visit the shuttle

clouds and animals-

tucans, tigers, monkeys-

covered walls and ceilings.

There it was in a room,

the big space shuttle.

I kept coming back

every single year-

used to put me to sleep

They pricked my hand

I used to cry, cry, cry

It used to have stickers

Lion King stickers, inside

It is just plain white, now.

I am older and I know

it is not a space shuttle

They still prick my hand

I learned to lay still

It's really hard to not-

wiggle, wiggle, wiggle

I still come back

every single year

It used to be very loud

but now the tube is silent.

I used to get a toy-

Now I just get a CD,

and schedule another.

Vestibular Research as a "lab-rat" for NF2

Total darkness

Chair moves left

Was that right or left

I think that went right

oh, definitely left

Lights come on-

then off, again.

Chair moved down

and down, again.

I know I can't say down-

too many times-

I'd go through the floor.

I think that was up.

Was that up or down

It is confusing

hard with no balance

Tilt to the right

Right, I think

Feeling weary now

Chair tilts to the left

Lights come back on.

I hear “start” and beep

I hear “respond” and beep

I have to decide

which button to press

I press the right

then press the left

Repeat hundreds of times

It was mentally exhausting... when I got back, I think I slept for 9 or 10 hours!

---------------------------------------------------------------------------------------------------------

 explanation...

I had an interesting experience on Thursday, I had two appointments and pre-op in Boston for my NF2 , but during the short time breaks before, after, and between each of those appointments and then some more on Friday, I participated in about eight hours of a vestibular research project at Massachusetts Eye and Ear Institute, that I had been asked to take part in. (They paid be a little compensation to do it, which was a nice bonus.) It was especially interesting because they had never done the test with a person with bilateral loss of balance nerves, nor a deaf person, for that matter. I had to sit in a strange looking big robot chair that moves on some tracks, in complete darkness, and then press either of two buttons to indicate which direction I perceived the chair motion having had made. My feet were on a platform below and moved in the same motion as the chair. It could move side to side, or up and down, or tilt right or left. Sometimes I could tell my feeling the direction my body moved, but other times I just had to press a button and guess! This task would be difficult for any person, but I think they were particularlly interested in working with me because they know I have no intact balance nerves, however do these things that I'm “not supposed to be able to do,” such as marathons, triathlons, etc.

NF: A Life Sentence

Pet therapy 2 days after my NF surgery

Hi everybody! My name is Jen and I have NF1. My mom and brother also have NF1.  I never thought anything of it when I was told I had NF.  Other than 'spots' and outer tumors, etc, I thought that was all NF was about. I never had pain or complications, etc. Then in 8th grade (around 1996) I came down with migraines as well as  the most terrible facial pain. I can't describe it. The pain would then extend to my neck. I woke up one morning with my neck all twisted, and I had to stay home from school for a few days. The facial pain got worse so I thought it was my wisdom teeth. Had an x-ray and from there he saw something strange (and it had nothing to do with my wisdom teeth) so I had 2 more x-rays, a CT scan and an MRI I guess to really make sure what they saw. The revelation: a tumor in my skull, and an optical glioma. Had a follow up MRI a year later, and nothing changed, so I didn't see anymore doctors for at least 10 years (when I moved to Boston and learned about the NF clinic at MGH). I actually didn't know the extent to my facial tumor until I moved to Boston. Imagine a flat jellyfish and that's what the tumor in my skull looks like. It wraps around my sinus cavity, my nose bone, my upper jaw (I have a lump in my jaw that dentists keep thinking it's some gum disorder), around my temple (part of my skill is actually lifted at my temple) and somewhat behind my ear. so that explained the facial pain and frequent migraines! When I was first given the MRI, my doctors were not very clear about where the tumor was, how big it was, etc. So I am REALLY glad I am in Boston, and that my doctor is cool enough to show me pictures. Dr. Scott Plotkin is a good guy. :)

Thanks to NF I am short. I also have mild scoliosis and thanks to my optical glioma, I am partially color blind in my right eye. I wear glasses. When I was in school, of course, people made fun of my height and often made fun of my spots. One day people in my drama class passed a note around with a picture of a face and neck with spots everywhere (though I don't have spots on my face). I knew it was about me. I wonder what kind of pleasure that gave them to make fun of my cafe au lait spots.... silly.

Anyway, my face doesn't hurt as much anymore, and I rarely get migraines, but in addition to my facial pain, I developed awful lower abdomen pains for years that was worse than my facial pain. When the pain got worse, I thought it was a gynecological issue. Had ultrasounds, etc, nothing. Then I thought it was a  gastrointestinal issue. So I had an upper GI, endoscopy, colonoscopy and guess what? They randomly found cancer in my stomach- totally unrelated to my pain in my abdomen! This was in 2009. I am still dealing with repercussions from THAT surgery (mainly esophageal problems).

My NF survival wound. You can sort of see my scar
from my cancer surgery, which extends from my belly button
to my sternum. They recut a good portion of my old scar!

 During the summer of 2010, my abdominal pain became excruciating. I had my gastroenterologist run many more MRIs, etc, and turns out I had an NF tumor where I had pain. I didn't find out about this until February 2011. I then couldn't get a hold of my NF doctor until this past JULY to talk to him about dealing with it. Had a biopsy to make sure it wasn't a sarcoma (needle biopsies are terrible by the way! I felt EVERYTHING). The only thing that could be done for me (since pain meds did nothing even oxycodone for a <100 lb person did nothing!) was surgery. So on Aug 23 I had my first NF surgery.  Of course now I have some sensory nerve damage (that's slowly going away). I take 2400 mg of gabapentin a day and that helps tons! I recommend that for any tingling types of pain you might have! And visit a pain clinic. I see a pain psychologist and she is AWESOME. My primary care doctor is also awesome, gotta add that in there too :)

I still have pains in my left and right side. Before my surgery, my surgeon told me that my right side pain was just referred pain, and that it would go away after my surgery. Well, it hasn't. It took 7 years for doctors to finally find the answer for my left side pain, let's see how many years they will take to find something on my right side.

I additionally worry about new tumors growing. I never knew tumors can just randomly GROW with NF, but they do. That scares me. What if more grow back? What if I become in pain again? I seriously could not function from 2010-now. I don't know how I survived my first semester of grad school but I did. What keeps me going is that I know there are people who go through worse.

I call NF a life sentence because those with it have to ENDURE IT. They have to worry about tumors growing randomly, tumors pressing on nerves, surgeries, pain meds, etc. It is baffling to me how NF is so misunderstood, yet it is one of the most common genetic disorders. I am not downplaying other genetic disorders, but NF deserves more attention. Some people have no problems with their condition, but many DO, and when people DO, their problems are awful. And there's usually nothing that can be done about it.  Some people go deaf, some people become paralyzed, some people have disfigured faces, some people can't function because they are in so much pain (back pain, stomach pain, leg pain, etc). I really love how there have been more walks, more races and more fundraisers about NF.

This is Bob :) I have named
all of my tumors

There are several NF non-profit centers around the country that help put on races, etc, so you should check it out. Here is the Facebook link for NF Northeast. This is for Michigan This is for Arizona This is for California, and this is for Louisiana. ... that's about all I can find on Facebook!

I have a personal blog which chronicles my personal battles (and all the drama that occurs between me and doctors). Feel free to follow me and if you have a blog let me know so I can follow you!

Thank you for reading my story.

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.

My World Without Sound

I live my life in a kind of isolation, a nothingness. I see things
that aren't meant to be seen. My fifth sense has been snatched
away from me, without warning, without preamble. Growing up
all my life with sound, children laughing, birds singing, waves crashing
along the shoreline, only for it all to be taken away. I am lost,
I grieve as if I have witnessed someone close to me slowly perish. For years, I
had no control, over myself, over my life, over anything. I was simply forced
to watch while everything I knew, everything I'd once taken for granted, was taken away.
It is my world without sound. I "hear" things that aren't really there, memories,
recollections of how it should be, but isn't. As I drive in a car, I see a
neighborhood boy bouncing a basketball. I hear the thump-thump as the
ball smacks against the concrete, but it is not really there. When the dog barks,
I "hear" it, but it is not really there. When a child laughs, so innocent, I "hear" it,
but it is not really there. My world without sound. I would do anything, give anything
to hear the waves crash along the shore again.

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.

Invisible tears

Fall '08 XC- this face says it all

 This does not have a specific rhyme or syllable count format and for that I suppose I should apologize- It is simply the thoughts flowing from my head, as I have learned that it is that type that often makes for the best poetry.

Sweat runs down my face
as I run fast as the wind.
Sun shines on the rain puddles
and reflects on my tears.
Nobody knows I'm crying-
the sweat mixes with tears.

A grin pasted on my face-
for the world to see.
Sometimes I have joy,
some days I'm boiling.
Anger, frustration, confusion-
fill my aching heart.

I finish running for now.
I should be studying,
but I take off for a swim
I am not finished weeping.
Nobody can see my tears,
in the chlorinated pool.

I pull myself together
to paste that smile on me,
for the world to see.
Yes, I am doing just fine,
inside of me, I'm normal-
Normal- like everybody else.

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.

           

Quilt of runner...

Okay, so I thought I should post this on here, after another blog-author (Ellie- 2 posts down) said that she was "not a poet or an author, if only she could have sewn a blog"... (that made me think of this quilt) This is a quilt that I made for a quilt elective class that I took last year, and this photo was taken on one of my many trips to HEI in Los Angeles (I'm also wearing the yellow NF Endurance Team t-shirt)  Steve Otto, my audiologist that programs my Auditory Brainstem Implant commented on the large bag I was lugging around, though I was there for only one day, and I explained that I brought the runner blanket I made, for my red-eye flight back to the Atlanta, so then he wanted to see it and get a picture of me with it!

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...)

Zenith

I wrote this poem in 2008, it is about keeping my faith and overcoming obstacles.

Zenith

The road is the path,
Where it leads me
From foot to foot
I will take it.

Many summits and canyons
Will come on my course
Challenging me so many times,
I will run them all.

Never looking back
Eyes looking on the horizon
Keeping my measure
I move onward.

In many ways
The people I meet
I will always keep
In my heart.

A myriad of crossroads to choose
The ones I adopt
Have reasons to be journeyed
To continue the legacy of the road

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

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. :)

Literary work #1, By: Anne S.

I started writing this in class, so I figured I'd post it here.  It's a "renga" styled poem (chain of haiku) and each set of 3 lines forms a haiku (5-7-5 syllables) and tells a snippet of a longer story, about my first 70.3 Ironman race, so I thought this would be good to get this thing started. Please contribute whatever you think is appropriate! Thank you!

Off to bed by ten.
Try to get a good night's sleep.
Leave by four AM.

Sandles, forty out.
Bundled in sweats and wetsuit.
strip down to that suit.

Goggles, cap- ready
Cannon fires a loud bang,
and the pros are off.

Brrr- it's cold- just swim!
The water is sixty-two.
Swim one-point-two miles.

Ankle slap, Head kicked.
Try to follow the bouys,
to stay on the course.

Exit water- brrrr!
Quickly strip off that wetsuit.
Barefoot. Run. T1.

Run across the grass.
Helmet, gloves, socks and shoes- GO!
Pedal fast and smooth.

Gulp some power juice.
Use Propectuem or that GU.
I need nutrients.

I see many signs
chalk written on the asphalt
insprational

no complaining here
earn your iron today
you are my hero

on and on they go
my knees wanna quit,
but my heart says GO!

Before I know it,
I am half way done with this race
keep on pedaling

Ten more miles to ride,
before I hop off this bike,
Transition is soon.

T2- I arrive at,
I change shoes at speed of light
and off I go- RUN!

Why do I do this-
some people think its insane!
Awareness I bring.

I wear bright yellow
NEUROFIBROMATOSIS
Hope to end NF

On and on I run,
through many aches and bad pains
With one goal- FINISH!

Run thirteen-point-one
I run two big loops- one done
six more miles to go

I walk a little
on only the second loop
Slowly I run now

I want to finish
And finish- I know I will
I have had some doubt

but now I know I will
Near mile twelve- I see my dad
He runs beside me

I am almost there
One mile to finish
I see the finish!

Inflatable arch
Almost magical it seems
8 hours 5 minutes

Camera everywhere,
Cameras flashing and clicking,
I feel like a star.

Volunteer approaches
to as if I am okay.
they hand me two drinks.

My fiance waits,
end of finish chute, he stands
I see him waiting

I hug him tightly,
and give him big sweaty kiss,
then we go find food!