Reaching out to families affected by Neurofibromatosis (NF)

Today is World NF Awareness Day.

A day you’ve probably never even heard about, a day the Blazier’s wish everyone knew more about. I urge you to take a few moments today to read this story, a story by an incredible family I am honored to call my friends, my family, my military family. Even if you have never heard of NF or met anyone who has it, please share this story. I would love to help Jordan connect with others also diagnosed with Neurofibromatosis, he’s waited more than 12 years already. Let’s fix that today.

May is NF awareness month

What is NF? Neurofibromatosis (NF) encompasses a set of distinct genetic disorders causing tumors to grow along various types of nerves.

In addition, NF can affect the development of non-nervous tissues such as bones & skin. NF causes tumors to grow anywhere on or in the body. There are several different types of NF & manifestations differ from person to person. From Café-au-lait spots, the most common sign of NF, to Neurofibroma tumors which vary in size and composition, each person carries their own unique symptoms. Roughly 100,000 people in the U.S. have been diagnosed with some form of NF, yet there is no cure & few treatment options available.

Meet the Blaziers

Neurofibromatosis AwarenessMy name is Jennifer, I am the parent to an amazing 13 year old boy, named Jordan, who was diagnosed with NF1 on his 1st birthday. Jordan is like many other teens. He enjoys playing sports, hanging out with his friends, driving his younger sister crazy, hates cleaning his room and has a zest for life that many adults would love to recapture. But, unlike other kids his age, Jordan feels comfortable in hospitals & around doctors because he has spent his entire life being followed and cared for by numerous specialists who monitor his tumor(s) growth and other clinical manifestations.

Jordan’s most recent development and complication has been the growth of an inoperable Astrocytoma brain tumor. Although considered to be a rare tumor, pediatric astrocytoma tumors are considered to be common among NF1 patients; as they are considered to be tumors of the central nervous system. The number of tumor growths and type vary widely among affected individuals from only a few to thousands. Presently, there is no way to predict how many persons will develop NF, how many tumors they may grow or how their specific symptoms will affect them. Therefore, regular checkups and MRI scans are the preferred diagnostic tools to monitor tumor growth. Tumor removal is risky and not always an option (as in Jordan’s case); typically, NF tumors grow along the patient’s nerve ending that originate somewhere along the central nervous system. Complete tumor removal requires the skills of a surgeon who specializes in tumor extractions that remove the tumor; yet, not disturb any affected nerves, which often times could result in paralysis of the affected area.

I am not sure if there are any words in the English dictionary that would adequately convey what it is like to be a parent of a child who has a condition that science has yet to discover a cure for. Yet, at the same time and through all of this craziness, we feel blessed as Jordan’s parents! We give thanks and praise God for choosing us to be Jordan’s parents. We are thankful for the amazing team of physicians that surround us & guide us along this journey. We are appreciative for having the opportunity to watch and learn from our amazing son; who continues to be our teacher almost daily. Most of all, we are thankful that Jordan continues to live and fights the fight. At 13 years of age, he still has much to learn. Yet, at the same time, Jordan has so much to offer this amazing world we live in. As parents, there is not a day that I do not stand in his shadows in awe of his personal courage, his resilience and his zest for life. Since the day we first heard the words and learned of Neurofibromatosis, as Jordan’s parents, we vowed to never allow his medical condition to define him or limit all that he could become. It is for this reason, I honor my son’s wishes today, by sharing Jordan’s story, in hope of giving back to others by bringing awareness to the NF community.

The Children’s Tumor Foundation is the leading foundation for Neurofibromatosis 1; whose mission is to educate, advocate and bring awareness about this medical disorder to one community at a time. Finding cures and treatment options starts with the understanding that an issue exists. A patient registry was initiated in 2012. One of the purposes for the registry is to bring NF families together so they can: gather a more accurate picture of of how NF has affected each individual who has been diagnosed, networking, research studies, etc. Knowledge is important and becomes the power needed for the building blocks to finding a cure.

We are asking any individual diagnosed with NF1 to register at nfregistry.org .

Your confidential information will be used by researchers to help find treatment options and ultimately a cure. To find out more about NF please visit ctf.org which houses a vast variety of information about this diagnosis, the foundation, ongoing research and volunteer opportunities to those who wish to help bring awareness into their Community.

Thank you for taking the time to read a little about our story. Hopefully we have inspired you to help spread awareness about NF and encourage those affected to register at nfregistry.org.

Again, thank you and God Bless.

The Blazier Family

 

Stacy

Stacy is seeing the world in a whole new way – through the eyes of her children. She writes about the little things, the big things and all the “stuff” in between at Kids Stuff World.

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Comments

  1. says

    Greetings!

    I randomly came across this post on Pinterest. My father and sister both had NF. I will have my dad register. My family knows all to much about living with NF for over 70 years! Let me know if you would like to connect.

    All my best,

    Kim

  2. Anita gribben says

    Hi we live in new York and my 15 year old son Bailey was diagnosed at age 10 with NF2 . You can read part of his journey on his donation page http://www.ctf.kintera.org/r4r2014/baileygribben . We are dedicated to help funding for research for a cure for NF for our NF Heroes .In the past 4 years we have raised over $40.000 for Cildren’s tumor Foundation. We signed Bailey up in the NF registery last year at the CTF family forum. Great article and lots of love to your family , especially your NF hero Jordan.

  3. Debi Shackowsky Grandmother of Jordan says

    Jennifer,

    What a beautiful and personal story you have shared with the world in hopes of bringing awareness to others; thus, to find a cure. I admire your courage as I also know this is your first writings detailing specific’s about Jordan’s Neurofibrmatosis 1; specifically, the inoperable astrocytoma brain tumor. Jordan IS an amazing child because of the parents who created and raised him in this world. I know how difficult of a decision writing this personal story was for you. However, I also know and recognize what a beautiful gift your story is to your son. As there is nothing greater in this world than a parents love for thier child, even if that gift involves putting aside years of personal guarded privacy to share with the world in hopes of finding other’s with NF1 and encourage their registration with the NF registry. As we know, “…United you stand, divided you fall…” rings true in this situation. Not until others can be informed of the NF registry’s exisitence and the importance of registering can there ever be hope for a cure. Not until researches can truely notice (through the numbers registered) how many are affected with NF1, will there ever be enough dollars ear marked for further research; nor incentives for the pharmaceutical companies and researchers to move forward with needed trial studies and further investigations. Jennifer, Stefan, Jordan and Natalie…. I continue to walk aside each of you in your journey and stand 100% committed in the cause for finding a cure for Jordan and all the other Jordan’s out there regardless of age or genders. Jenn…As you eloquently stated, God has blessed this family in providing us Jordan and the phenominal medical care provided through the years. Lastly, I wish to honor Jordan for his emotional maturity, as evidence by his unselfishness in allowing his story to be told through his mother’s words. I know of few, if any, other 13 year old teenagers who realize the values of humanity and helping others for the common cause. Again, those qualities can only be learned from parents who obviously emulated through example in their parenting.

    “Everyday is a Gift”

  4. Kim Neill says

    Blazer family,
    You guys are amazing!
    Jen and Stephan, I know Jordan gets his zest for life by being with you guys.
    Natalie, you are so strong and beautiful. Although you and Jordan fight, you have always demonstrated and expressed your love for your brother. You, too walk this difficult road with character. Thank you for understanding and not being an undue burden on your parents in order to gain the spotlight of their attention. Happy Birthday by the way!
    Jordan, so young yet so wise. Some of the profound stories you have told or lessons you have taught your parents are inspiring. I would like to know where or from whom you gain your peace and hope for tomorrow. It’s my prayer that through your experience, God will enable the gifted medical team your working with to find the cure. It’s my prayer that you become a medical miracle and live your life free from NF tumers.
    I am blessed to know you guys and pray for you guys.
    Kimberly

  5. Tina Van Doren says

    I have known this family and Jordan since he was a toddler, he is truly an amazing young man with much to teach the world. God has blessed your family and all the people who’s lives your family has touched. We love you all. Tina & Tyler

  6. Evie says

    Our 10 month old was recently diagnosed with NF 1. It’s been a roller coaster and just makes me love him more. So far, he has cafe au lait and a bowed leg. Its all just a wait and see what happens right now. Praying for your son!

    • jennifer Blazier says

      Evie,
      I’d love to connect with you. Please find me on Facebook under Jennifer Spencer Blazier so we can chat in a more private setting. Thanks for sharing your story. I’d be more than happy to offer some stories of encouragment, as I remember walking in your shose like it was yesterday. I wish you & your son the best.
      Jenn

  7. Steve McKenzie says

    Blazer family, Don’t give up. I have lived with NF for over 50 years. Be strong and keep sharing your story. We need to contact congress and let them know about Jordan and let them know that we don’t want anymore funding cuts to help find a cure. I have shared my story with my congressperson but one story will not get the job done we more. My hope for you and Jordan is that you have a wonderful doctor who knows about NF. Some day we might have a cure. God bless your family. Steve

  8. says

    I had never heard of NF before this article, but am bowled over by the Blazer family’s strength and fortitude. Will keep you in my prayers and do what I can to raise awareness.

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  10. jim spencer says

    Hi,my name is jim. I`m Jennifers father. I would first like to say that Jennifer and Stefan are the Greatest parents I have ever known! The lives they had growing up was difficult enought. Then to be a military family, with all the travel and separation. To find out that their son has an incurable condition, which very few doctors have even a clue about, but maintain such a positive attitude is nothing short of a miricale. They have been able to raise both their children to be models for other children. Jordon and Natalie have great love and respect for each other. That`s not to say they have their moments.
    Jordon is one hell of a trooper. He goes about his life without whinning or complaining. He has set a high standard for even me to follow.
    I`m extremly proud of Jennifer and Stefan. And my two grandchildren are to be commended for their maturaity beyound their age.
    I will do whatever I can to help raise awareness of NF. This is now a goal of mine. This I will do to honor my grandson and all those who suffer from NF.
    Sincerly,
    Jim Spencer

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