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
My 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