Pregnancy and Neurofibromatosis

*If there is a history of a genetic disorder in you or your extended family, it's best to ask for genetic counselling before becoming pregnant. The number of tests available for genetic disorders is increasing every year, although they don't tell the potential severity of the condition.


I was 7 years old when I KNEW I wanted to become a mother.  Carol Brady was my idol, and I wanted to be just like her.

Neurofibromatosis never entered my mind, when it came to wanting children.  In fact, as far as I knew, I had nothing to worry about with regards to NF.  I was examined as a child, after my older brother Mike was diagnosed with NF, and my parents were told I didn't have it...so why would I worry?

I was confused when I began to have some NF symptoms, but was continually dismissed by doctors, whenever I would bring them up.  I was simply "birthmarky and freckly", and didn't need to worry.

My first baby was born in 1996 and I couldn't have been more happy. The few "bumps" I had seemed to grow a little ... and a few more seemed to pop up.  But they didn't hurt or cause me any issues, so I didn't worry...And when my 2nd child was born in 1997, I knew that being a mother was exactly what I was meant to be.

None of my obstetricians mentioned the bumps (that were very obvious)....Until my 6th pregnancy.

As I wrote in my book, Thriving with Neurofibromatosis , this was my wake up call...when I finally "got  NF"...The moment I realized I had been overlooked and seemingly ignored by the medical community, and personally ashamed and hiding in fear from my own concerns and doubts for FAR too long.

That 6th pregnancy - when an obstetrician indirectly, but effectively, shamed me for bringing children into the world. I knew then and there I had a battle on my hands.  I knew that I would have some explaining to do, to those in my life, around my life, and even to myself to a degree, to create an understanding as to why on earth I would risk damning my children with such a dreaded "disease".

It wasn't long after Brooklyn's birth that I began to understand and accept ALL that Neurofibromatosis meant for me, and for my family (which was A LOT).  My own NF symptoms had gotten worse, and I was scurrying around Eastern Washington, trying to find a doctor who had actually even  heard of this disorder.

3 of my 6 children would also get the NF diagnosis...And with that brought tremendous guilt.  And this guilt was almost paralyzing...Almost.

I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor--(which, from what the drs told me, have been there my entire life) while at the same time, vision issues and tumors began appearing in my children. It was all consuming, and could have easily overwhelmed me.  But my choice to have children brought with it the responsibility to accept these outcomes.

This blog, was born 3 yrs ago...After my decision to be proud of the choices I had made.  Everything you do in life is a choice...and you can also choose to be proud (or not) of those choices.

NF could have happened to any of my children, even if I didn't have it.  Or Downs Syndrome, or Muscular Dystrophy or a hundred other disorders lurking within the genetic code of the human race.

As each of my children have grown, I have also grown.  I am confident that my choice to have children was the right one.  I would not wish Neurofibromatosis on anyone...But my children have given so much good to this world, and I can't imagine my life without them.

This isn't a post trying to justify my decision to have children, it's simply my story about my choice to do so.  I respect those who choose not to have children. If I had known more when I was 19, maybe I would have made different choices. Maybe there is a reason I didn't know more, and maybe those reasons are named Bailey, Braden, Riley, Rachel, Riker, and Brooklyn.

 

Life in itself is a risk. My job now, is to provide MY children something I didn't have; A full understanding of what NF means for them....and what it COULD mean for them, if they go on to choose to have a family. Education - the E in "The E.A.S.Y. Way to Thrive" is my goal for my children, for myself, and for the world. Not so we can always make the 'right' choice, but so we can make the 'right choice for us'. 

Thrive on! 

E.A.S.Y. Way to Thrive (part 2)

E.A.S.Y.

(A)

ATTITUDE/ACTION

Yesterday, I talked about Education being the first part in changing how you look at your struggles.  Understanding and learning about what you are dealing with, helps so much in giving YOU the control and not allowing your condition to control you.

While education is important, it is nothing, without a positive attitude.  What good would knowing all about your condition do, if you have a really bad attitude about it?  How would negativity help in making you feel better?  

I grew up in a very toxic environment, where Neurofibromatosis was an awful swear word, that was never to be brought up.  My mother still carries with her, a tremendous guilt for 'giving' her children this horrible, unpredictable "curse".

I watched my mom, and how she treated her own NF and how her fear and negativity was spread around, affecting everyone in her path.  It was no secret that my mother was scared to death of NF.  She allowed that fear to control her, blinding her from the fact, that she actually had TWO children affected with NF.

For years, I wondered, what was wrong with me.  Why were my symptoms being ignored?  Why was I showing the same signs my brothers was, and no one was doing anything about it?

Attitude.  A fearful attitude will keep you from Thriving, plain and simple.  A depressed outlook, will limit the possibilities that are within reach for you.

YOUR attitude and YOUR actions are the only part of your life with Neurofibromatosis that you can control.  I know that we are brought up in a world who encourages us to blame how WE feel on anything we can find.....Blame God.  Blame the Doctors.  Blame our parents....

But when it comes down to how we REALLY feel....It's not the people around that we can truly blame.  It's the person that reside in our hearts...and the actions WE CHOOSE, or CHOOSE NOT to take.

I didn't start out 'Thriving with Neurofibromatosis'.  I made a choice, to not live in the negativity anymore.  I made the choice to break the cycle and DO SOMETHING, instead of sitting hopelessly by waiting for NF to do something to ME.

I don't sit behind a curtain of shame and fear.  I put myself in front of the world.  I share my struggles, my triumphs.  My good days, my bad days....In hopes of making a difference.  These ACTIONS changed my ATTITUDE.

When I find my attitude suffering the most, is when I choose to sit and do nothing.  Thriving or not....I still find myself there.  I just choose to not stay there.  It's when you choose to get up from that spot, and move on to the next moment in your lives, when you choose to take ACTION... you truly THRIVE.

THRIVE ON!

Ignorance Is Bliss?

If ignorance is bliss, why aren't there more happy people?  ~Author Unknown

"Mommy, what are those bumps on your back and tummy?"  The response to this question, that I asked my mom, when I was 8 yrs old was met with rage and anger, "That's God's curse Kristi!"

If you haven't read my book, my story is that of fear and ignorance.

Hear NOTHING about NF, because it's too scary, speak NOTHING about NF because we don't know enough, and close our eyes to the symptoms, because we don't want to see the potential problems that NF can cause.  Unfortunately, this is how many of those living or dealing with NF, chose to live their lives.

While I was paying for gas this morning, the checker noticed the back of my van, and told me that her son was diagnosed with NF when he was 6 months old.

I was thinking "AWESOME" (not because the kiddo was diagnosed, but because I found yet another person to connect with!)

I asked this woman if she was part of the CTF chapter in Denver...and she responded "NO...and I don't really want to be."   Whoa, I thought to myself.  She must've had some kind of bad experience.  "We keep our son at home, and don't need any help from anyone." she continued.  "We've seen drs, and we know what he has, and just choose to keep him away from them."

I (for the first time ever) was lost for words.   I understand how frustrated people can get with the medical community. When we don't hear the answers we want, its easy to throw our hands up and walk away.

This woman went on to tell me that her 3 yr old son has a plexiform neurofibroma that wraps around his armpit and neck.  "We had it imaged, a year ago, but there's nothing we can do about it, so we just want to have our son home."

We hear that a lot in the NF community - "There's nothing that can be done." When we hear that, we should translate that as "There's nothing we know of that can be done, but others might know more" or "There's nothing that can be done RIGHT NOW, but we need to watch this, and watch out for other symptoms of NF".


If we shut ourselves off to the medical community as a whole, essentially throw the baby out with the bathwater, believing "nothing can be done", we may as well give up totally and give in to this dreaded disorder.  There may be plenty that can be done!  Research and treatment changes everyday! I can understand feelings of helplessness.  I get total frustration, with a world that is ignorant about NF...But why, on Earth play a part in it?

I have been told a hundred times, that with my hydrocephalus and brain tumor....that "nothing can be done"....but I refuse to just roll over and take that as the final answer. 

I won't let the doctors who choose to not go the extra mile in my case, stop me from finding a doctor that will.

I will not teach my children to give up, just because someone tells them no.

It is OUR responsibility to fight for what we need and deserve. If we cover our eyes, we will fail to see all the good and all the potential those with ANY disorder have.  If we cover our mouths, we fail to speak out and share with others about NF.  And if we cover our ears, we fail to hear about new treatments, new studies, and new ways to get involved.


Thrive On!

Chemo and NF

All is well here--Considering all that's going on.  The only side affect from the Chemo seems to be exhaustion.   But Bailey is handling it like a champ!

This weekend we were playing at the park and it was like nothing was changed....Nothing was wrong.

We know however, that this is the calm before the storm.  We know that once the chemo builds up in Bailey's system, things will change.

So we focus on our good days....The days where Bailey feels like playing, instead of sleeping....and most importantly we keep up our spirits and believe that this road we are on, is a temporary one, that will lead us to a better place.

I have to say, I never imagined a life that included taking a child to chemotherapy.  I doubt that anyone could imagine it...or want to.  But it is true, that it affects everyone in the family...not just the one getting hooked up to the IV every week.

Our family has been turned upside down.  Everything now focuses around the weekly chemo treatments, and the side affects that come from that.

I find myself struggling to balance life, with 5 other children who need me just as much as Bailey does.  Some days this balance is exhausting...I don't feel like I'm doing enough.

Do You Expect The Best?

When faced with an unknown result, do you expect the worst or the best?

I admit.  I don't always see the bright side of things, despite my Thriving goal. When walking into a new situation, whether its a new doctor, a new church, or a new opportunity, I often expect the worst out of people and situations.  It's just the way I have always been.  If the bar is set low, expectations won't be totally trashed, right?

As a result, I've built a wall around me that people are often unwilling to scale, and that I'm hardpressed to walk out from behind.  It's a wall that has grown thick and high, for years.  But in truth, it really hasn't protected me, or helped me, at all.

When you expect the worst from people or things, they often deliver.  It's almost as if I seek it out.  Why would I do that?!  There is good news, and good people out there if I would just let my guard down and open myself up.

I've spent the last few days very worried about my daughter Riley, who a few years ago was red-flagged for potential juvenile diabetes. This week, she's been showing all the typical signs to watch out for - being continually thirsty, headaches, stomach pain. I've been so focused on a negative outcome, despite the fact that all those symptoms can come from other things. 

I'm going to work hard to change my thinking today, and assume the best instead of the worst. It doesn't seem easy, but it literally takes the same amount of energy, and the result is I feel better about life.

Today we'll head to the doctor and find out more, and I'll keep you updated. Whatever reality pops up, we'll be ready to Thrive. 

 "Prepare for the worst, expect the best"

Progressively Different

Neurofibromatosis is a progressive disorder that affects the nervous system.  No two people that are affected, are alike.  This finds people who are diagnosed with NF, feeling hopelessly lost.

One of the first things I did, to bring more awareness for Neurofibromatosis, was to participate in research.  The study was right down my alley.  "Variability with NF in families."

Why is NF so progressively different?  Why, when family members are diagnosed, are their symptoms so varied?

There are no real answers to these questions, which is why it is so important for researchers to have people step up and volunteer  to get a better understanding of this very complex disorder.

What are you doing with your diagnosis?  I know how scary it can be, to live with such unknowns...but why not take a stand?

FROM MY BOOK

The E.A.S.Y. way to THRIVE

EDUCATION

Fear breeds in the unknown....and ignorance lead nowhere.

ACTION

Live, think and breathe a 'Thriving' attitude. 

SHARING

When faced with ignorance or judgement...do not turn away.  Share who you are and what you live with every day.

YIELD 

Yield to the possibility that you can be whoever you choose to be.

Thrive On!

LOST!

I've been sick for over a week now.  It's tough even getting up to use the bathroom.  I hate this feeling of helplessness.  I hate relying on others to help me feel better.  I'm used to doing things on my own...my own way...and most importantly...I'm used to taking care of myself.

Even while I am frustrated, I am also grateful.  I have seen a family that claims it it "LOST" without me....carry on  with really no complaining.  It's amazing what you can do....when put to the test.

I have seen my husband cooking, cleaning, bathing, taking kids to doctors appointments and showing me what it truly means to love.

So while I rest and catch up on my LOST episodes....I wanted my family to know...that it is ME that would be LOST without you.   Thank you for keeping going and for working so hard.  I love you!

Thank You!

I am sitting here, getting ready to sign and send off the third batch of my new book Thriving with Neurofibromatosis and I just wanted to thank everyone for the wonderful support and feedback.

I am excited to share my story with the world of those living with this diagnoses and I hope it brings a little hope your way.

I am humbled by those who have responded and appreciate the continued support!

It IS possible to THRIVE and I hope my book inspires people to be more than they think they can be!

This is what people are saying

"Where do I start.... It's just fantastic. I have not been able to put in down. Kristi is an inspirational young lady, whom I would love to meet one day. I have smiled and cried and laughed whilst reading this great book. I would suggest to anyone with NF, buy this book or put it on your wish list. It's a must!!"

KIWI-AMAZON REVIEW

"First off I am not much of a reader, but I could not put this book down. As an adult with NF(neurofibromatosis) myself it is often helpful to just see how other people can overcome the challanges of having NF to prove to yourself that you can overcome the challanges of your own. Kristi shares her life growing up in the book, it will make you cry at some points, and other times it will make you smile. An excellent book for anyone that has NF or knows someone with NF."

DAN H.-AMAZON REVIEW

"This book made me laugh and cry. I loved how open and honest the writer is with her feelings. This story helps me realize that I am not the only one who struggles with the issues of NF.
The writer is inspiring and uplifting! She has a way at looking at such a horrible disorder with true spirit and faith.
I couldn't put the book down! This is a personal account with uplifting stories...The writer educates and inspires her readers to go beyond surviving!
A MUST for friends and families dealing with the diagnoses of Neurofibromatosis!" 

KIM-AMAZON REVIEW

"Amazing book. You are so inspirational and have so much fight in u!"

Jade-FB

"very good book i couldn't put it down :)"

Hayleigh-FB

"It was a great read Kristi. And I liked the upbeat approach. I felt upbeat reading it"

Joyce-FB

"It was absolutely AMAZING! My 2 year old has NF and I really hope one day Bailey writes a book just like you. You both are so amazing and her words (MRI -consult) made me cry, I hope I can teach my son the way you have thought your children."

Teah-FB

"Just finished your book! In some parts I felt as if I was reading about my self. You did and awesome job on it. Thrive on!!"

Kambi-FB

Thanks Again!

THRIVE ON!

Do YOU like Change?

A good friend of mine wrote this wonderful article about change and I wanted to share it with you.  So often, we (me included) sit paralyzed with fear by what what change could bring.  Liz shared a new perspective, that I am adopting immediately.
Thank you Liz, for allowing me to share this...I found it refreshing and beautiful.

Change –

A few Sundays ago, Doug Smith asked our congregation about change. “Who likes change?” I was one of the crazy people who raised my hand. And since then, I’ve been wondering why. Here are my reasons for embracing change.

            Change is a great catalyst for growth and I would choose to grow rather to remain stagnant or die. I believe that, like many things in life, how we perceive change is a choice.If I choose to resist change I run the risk of regretting the past life that God has granted to me and resenting the future life God has planned for me. Change is inevitable. I do not want to create conflict in an arena where inevitability will always win. What is the point in creating needless strife; when life is already full of enough strive as it is?

            I am not accepting of change for change’s sake alone. So often, after one removes the shiny plastic coating from something “new and different” one finds nothing but the “same ol’, same ol’” underneath. Change - in and of itself - can either be positive, negative, or neutrally ineffective. A twenty dollar bill in the gutter can be spent wisely, poorly or left to deteriorate. Unlike change, twenty dollars can also be tucked away for the right time and place to be spent. But, mostly, change is not something I can control. I cannot slow it down or save it up for the moment I am ready for it. It occurs in God’s time frame and sometimes in the world’s time frame; but rarely in my own. Even when I think I have a five year plan or simply a plan for next Sunday, life has a way of changing it.

            Change does not always make me happy. Happy implies cheerfulness, high-spiritedness, or even naiveté, or giddiness. No, I am not always happy with change, but I choose to be accepting, and I am slowly learning to like it. I try to accept it with as little complaint as possible. I strive to live with it without causing undue conflict. I want to accept change and enjoy the contentment that resolution allows.  It is my choice not to find my life’s meaning in the winds of change. I do not find my self-worth in the changes life does or does not grant to me. I want to be content with whatever life changes I experience because I believe that life is greater than the sum of all its experiences.

“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.” Romans 12:2 

It seems to me that if I am to be transformed, I must be willing to change.

"The key to change...Is to let go of fear"

Rosann Cash

Thanks again Liz...God Bless You!

Where Were You?

If you haven't already heard...25 years ago the tragic news of the Challenger Space Shuttle echoed around the globe.   Read More

I wanted to share my own story, then share a wonderful blog post my hubby put out today.

I was in 5th grade.  Mrs. Adam's wheeled a TV into our classroom, and we sat on the floor surrounding the broadcast of the launching of the Challenger Shuttle.  My thoughts were that I was just happy to be getting out of classwork...but it was a big deal, especially to the few teachers, that had a connection, with the teacher on board that shuttle.

It was exciting to see the launch, and countdown with the TV....  5-4-3-2-1 Lift off!  I remember watching, and getting excited as the cloud of smoke cleared....seeing the rocket blast off!  

Seconds later...Something went wrong.  The cheering in the classroom turned to gasps and crying.  The TV was quickly turned off and the Principal made an announcement over the loud speaker about what had happened.

Our school later that year, raised funds to help re-build the shuttle, but the sadness lasted a very long time...and for some...it will never go away.

My hubby says it well...Tragedy can strike at any time....at any place.  The fear of tragedy can stop many dreams from coming true.  The aftermath of tragedy can be even worse.

The best we can do, is to pick ourselves up and carry on....and keep dreaming.

God Bless those that were lost 25 years ago.  You will never be forgotten.

 Please read my husbands blog

*thank you a great post*

We Have Neurofibromatosis....

Plexiform Neurofibromas

What are these tumors?  

Why do these tumors do so much damage?  

Is there anything one can do about it once they are diagnosed with these?

(these pictures are NOT my own.  I found them thank to Google images)

Plexiform Neurofibromas are ill-defined (meaning they are not round and typically grow deep within tissue and bone), slow growing masses that have been described as feeling like a "bag of worms".  These tumors are typically benign and are common with NF, but not everyone NF will present with them.

Studies say that about 30% of people diagnosed with Neurofibromatosis, have these types of tumors, affecting them in many different ways.  The growth rate is unpredictable, leaving some not diagnosed until adulthood, while with others these tumors are unmistakably present, causing deformities of the bone and skin in beginning in childhood.

Since NF can affect every organ in the body, "plexis" can appear anywhere, and cause significant damage.  The only treatment is to debulk the tumor as total removal is not usually possible, due to the tumor being  wide spread, attaching to nerves and organs.

Recently, my 13 yr old son was diagnosed with "many" small plexiform tumors, affecting his spine, and under his left arm.  I find it extremely frustrating when the doctors tell me, "there's nothing we can do".  What do you mean there is NOTHING you can do?  Aren't the doctors supposed to have the answers?  The cure?  The treatment?

This is the world of NF.  This disorder leaves most of us praying for it to stay "mild", or for the progression to suddenly stop.  I know for myself, I have a hard time knowing that while my NF may be "not so bad" now, it can take a cruel and steady turn, at any time.

This is why it is so important to focus not on my disorder, but on everything around me that IS good.  I am so much more than NF.  I am stronger and more powerful than anything that comes my way....and my goal is to teach my children this too.

NF throws a fork in the road of life.  You can choose to go down the path of anger, regret, and fear.  Or you can take the path of light and strength.  Both are sometimes very hard roads, but there is only one that will take you to a place of  HOPE.

I am in this fight, just like you.  You are not alone.

Thrive On!

A Year in Review

Snow has finally fallen here in Denver - and stuck long enough for my kids to want to go outside and play! Getting them ready for the cold is always an adventure. You spend twenty minutes bundling them in coats, hats, mittens, scarves, and boots, just so they can spend 5 minutes in the snow before coming in shivering and asking for hot chocolate!

Brooklyn, my 3 year old princess, was insistent she couldn't find her coat this morning - and my husband knew it was upstairs in her room, and told her to go look, or she wouldn't get to go outside. She gave a pouty, frustrated look, and said "I can't find it!", before even looking. Like many of us, she didn't want to take the effort to actually do something for fear she would fail. Rich insisted she at least walk into her room and look at it. With a huff, up she went, and came down just seconds later, coat in hand. "Where was it?" Rich asked. "In my room! On my chair!"

Surprise, Surprise!

As I look back at the year, I can 1. breathe a huge sigh of relief that our family made it through, even with all of the ups and downs that were thrown in our direction, 2. be amazingly grateful for a year that included surgery on my hand tumors, a move to Denver, two trips to Disney World, and the release of my new book, and 3. that our family continues to strengthen as we enter 2011 and await all that the new year will bring.

Sometimes, it's truly hard for me to be excited about the New Year, because I know with it comes new challenges.  For our family, as it is with most any family with Neurofibromatosis, 2011 will be another year of endless doctors appointments, MRI's,Ophthalmologists, Neurosurgeons, chemotherapy, surgery, and working to Thrive through all the physical and emotional aspects of having NF. 

Sometimes I just want to sit on the couch, throw up my hands, and do nothing. Why can't somebody else go get my coat -- I mean, handle all these problems?!? 

Even as I begin whining about all this, of course, I think about the thousands of NF'er's who have NO insurance, and few options to deal with what's happening inside them. That's when my frustration turns to gratitude, for a government that shows me they care about my kids health, for places such as National Institutes of Health, and for all the specialists here in Denver I am blessed to work with.

I may be scared and uncertain about 2011, but I know I won't stay in that state of mind. Uncertainty is the single biggest reason people fall into fear and depression. Instead, as I look into the New Year, I will focus on what I AM certain of - my family's love, the friendships I hold with so many, both in person and online, and that I will always be a rock for my children and husband as we face each day together.

What can you be certain of? Each of us has something or things in our life we can count on, if we look hard enough, and in the right places. The worst thing we can do is sit in uncertainty and doubt, and, ultimately do nothing, even if it means never getting to go out and play, or, more importantly, tackling our disorder head on, in whatever way we can.

Happy New Year - make 2011 the beginning of Your Thriving Life!

Reaching Out-Neurofibromatosis Style!

Obviously, I talk a lot about thriving. Not just with NF, but also in the other challenges I faced while not even knowing I had NF.


Ten...heck even five years ago, I was in no place to be out in the open with my NF. I was still in serious denial about what was happening to and around me.

What I've come to realize is that the more I'm "out there", the more I come to accept my diagnosis - and even help others accept theirs. The key to creating a more positive outlook on my life with Neurofibromatosis was to become my own Advocate - to stand up for myself and my kids.

The Children's Tumor Foundation in Denver held the 6th Annual Gingerbread House Decorating Activity today. Bailey, Braden, and Brooklyn all attended with me, while Riley, Rachel and Riker spent the day rehearsing for our church Christmas Play next week. Rich, in his infinite wisdom, stayed home watching football - COWARD :)

What a wonderful turn out there was...and GREAT opportunity to continue to reach out to families affected by NF.

I met so many new people today, with all levels of NF. One woman and her daughter stuck out in particular. She talked about how long she had been receiving the CTF newsletter, but she had never gone to an event until today. Like me, she was prompted by her desire to give her daughter, who also has NF, an opportunity to relate to others her age with the disorder - to stop hiding at home and seek encouragement from others. What she didn't realize is that her presence was an encouragement to all of us as well.

When we as NF'ers stand out in the open, when we stand together, we can find the hope that seems so difficult to hold onto when we stay hidden behind closed doors.

In Thriving with Neurofibromatosis, I talk about having the right Attitude, and taking Action. Today, I did that, along with about 50 other people, and we had a blast. What can YOU do this week? Who can you encourage? Remember, the easiest way to cheer yourself up is to spread the cheer YOURSELF!

Thrive On!



Tweet

Which Disney Princess has Neurofibromatosis?

Tough to say, isn't it? And Disney would probably say none of them.

Princess Rachel does have it, of course, and she is finally having her 8th birthday party today - always tough when your birthday is so close to a major holiday. She's having a Princess-themed party, inviting her school friends to arrive in their best costumes. Looking forward to what the lone boy arrives wearing!

I'll have pictures up later today of the fun - meanwhile, enjoy an excerpt from my new book - a few pages from the chapter entitled Worst Year Ever! Check it out here: http://www.thrivingwithnf.com/TWNFExcerpt.pdf

Gotta go - Party On....er Thrive On!

Happy Thanksgiving

November brings us the simple reminder that thankfulness is truly the kind of spirit we are to have, and this thankfulness will be more meaningful when we are both thankful to those around us, as well as our God above us.


Thank you to my friends and family for your support and love!

Thriving with Neurofibromatosis....Book Edition!

I have written a story about my life, growing up around Neurofibromatosis. Not being diagnosed until an adult, I talk about dealing with symptoms as a child that had no answer.

The story centers around my family; Their symptoms as well as finally realizing that my attitude about NF needed to change. The fear of realizing I was suffering from the same disorder my brother and mother was a crushing blow.

This fear had me hiding for far to long.

'Thriving with Neurofibromatosis' was born because I realized that 'Hiding with Neurofibromatosis' was not helping anyone....

I hope you are inspired by the stories in this book . I hope that it helps you or a loved one

THRIVE with NF

CLICK HERE TO ORDER

******Book will be sent --and signed in mid/late December*******