Neurofibromatosis Awareness Month-Brayden’s Story

*Brayden is the grandson of Jim Barrett, President of Road Scholar Transport.  The below is written by Brayden’s mother, Marybeth Barrett Grohs

May is Neurofibromatosis Awareness Month.  This month is especially close to my heart as my son, Brayden suffers from this condition.  He has endured multiple Hospital stays, surgeries and even a life flight due to his disease. 

Neurofibromatosis (NF) is an autosomal dominant disease that causes tumors to grow along nervous tissue and can either be inherited from the parents or can occur as a spontaneous mutation.  In Brayden’s case, the mutation was spontaneous.  There are three different kinds of Neurofibromatosis, NF-1, NF-2 and Schwannomatosis.  Brayden is affected by NF-1 which impacts approximately one of every 3,500 people. 

We first learned there was something wrong with Brayden when he was a year old.  Our first indicator that something wasn’t right was a small round pigmented spot on his skin.  As he grew, so did the number of “spots.”  We later learned that these spots are a Hallmark of NF and are called café au lait marks.  After taking him to the Doctor and having genetic testing done, we came to find out that he does, in fact, have Neurofibromatosis.

 Physically, Brayden looked like your typical adorable little boy but inside, his body was waging a war on itself.  Armed with a neuro-oncologist, we began our fight against the monster called NF.  At the age of 3, Brayden stopped having bowel movements all together and would become violently ill with vomiting.  We had no idea what was causing this and were referred to a GI Doctor at Johns Hopkins who ultimately, ended up saving our son’s life.  For almost a year, Brayden was unable to eat anything by mouth.  A ng tube was inserted and later Drs. put in a semi-permanent G- tube.  While we couldn’t find the underlying cause of the GI issues, his Dr was sure it was NF related and was caused by a slowing of the nerves firing in the gut.  Things continued and Life moved on.  We thought we finally had the GI issues under control but we were in for a big surprise. 

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May 27, 2014, the day that will be forever etched in our memories.  Brayden had not been feeling well for about 4 days.  He presented with nausea and vomiting and his stomach looked like he was 6 months pregnant.  As we loaded him into the car for the Hospital, he began vomiting feces everywhere.  We got him to the ER as quickly as possible where he was immediately checked out.  From there, things began to happen very quickly.  They came in, put a large suction tube down his nose, hooked him up to all kinds of monitors and life flight was called.  The life flight team bundled him up like a little burrito and strapped him into the helicopter.  Brayden had a severe ileus that was threatening his life. 

Thankfully, Brayden pulled through this traumatic event but continues to struggle with GI issues to date. 

In addition to the GI issues, Brayden also suffers from lesions in his brain and tumors on his spinal cord.   Further, he had a bone tumor removed from his tibia a few months ago.  These tumors are getting progressively worse.  (NF is a progressive disease with NO cure.) He used to play football but recently had to give that up due to the pain.  We are working with his neuro – oncologist to put together a plan that allows him to live an active life. 

Brayden and 100,000 other Americans are impacted by this debilitating disease.  In honor of him and all of those affected, Road Scholar has designed a moving awareness bulletin that travels across the country bringing hope and awareness to millions.  Through awareness comes hope, through hope comes a cure.  Please learn more about Neurofibromatosis at the Children’s Tumor Foundation. 

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