Road Scholar Transport has been spreading awareness for various charities and organizations across the country for over a decade now. What started off with a single pink breast cancer truck in 2007 has now grown to over 50 awareness trucks, our most recent dedicated to all of those heroes keeping us on the road to recovery. This May, we’d like to call your attention to two causes in particular…Neurofibromatosis and Lupus.
National Neurofibromatosis Month
*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. An ng tube was inserted and later doctors 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.
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 and through hope comes a cure. Please learn more about Neurofibromatosis at the Children’s Tumor Foundation.
Lupus Awareness Month
Road Scholar Transport kicked off 2013 by rolling out a truck dedicated to Lupus awareness. Our Lupus truck was created in memory of Tanitha Kulsiri, who passed away from Systemic Lupus Erythematosus (SLE) in 2003 at the age of 22. Working with Tanitha’s mother, Nuj Fungladda, and the Tanitha Kulsiri Memorial Foundation, Road Scholar got to work designing a new truck.
When Tanitha passed away, Ms. Fungladda honored her by creating a book (Awkward Grace) of Tanitha’s compiled works during her last 10 years. She sent the book to Bridget Barrett, Road Scholar’s awareness truck designer, for inspiration. One of the narrative poems she came across contained a drawing (a sketch that Tanitha created in high school) which caught her eye. Loving the picture, Bridget decided it would be perfect for Road Scholar’s new awareness truck. So she cleaned up the image and added color, giving it brunette hair, the color of the woman’s hair in the poem.
Bridget then added the truck’s purpose to LIVE BEYOND LUPUS and incorporated TKMF’s website and logo (two flying pigs kissing, another artwork of Tanitha’s).
“As a mom, I could not accept the fact that I’ve lost her for no good reason,” said Ms. Fungladda. “There has to be a reason for this to happen and something good needs to come out of this terrible loss. Everyone at the foundation and her friends would like to express our deepest gratitude for all the support that Road Scholar has given us.”
Lupus is a “chronic, autoimmune disease that can damage any part of the body including the skin, joints, and/or organs.”(1) There are four types:
*Systemic Lupus Erythematosus
-This is the most common form and ranges from mild to severe. Systemic Lupus Erythematosus can affect nearly every tissue and organ system.(2)
*Cutaneous Lupus Erythematosus
-Affects the skin and can cause rashes or sores on the “face, neck, or scalp or in the mouth or nose. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.” 10% of individuals with this type develop systemic lupus.(2)
*Drug-induced Lupus Erythematosus
-This type rarely affects the major organs, however, has many similar symptoms as systemic lupus. Caused by certain prescription drugs which include hydralazine, procainamide, and isoniazid, this form is more common in men. Once these medications are stopped, symptoms usually cease within 6 months.(2)
*Neonatal Lupus
-Rare and not considered “a true form of lupus. Affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb.”(2)
According to Lupus.org:
-Nearly 1.5 million Americans have Lupus.(3)
-Over 16,000 new cases are reported each year in the U.S.(3)
-90% of individuals with lupus are women between 15 and 44 years old. (3)
-20% of people with lupus have a parent or sibling with it.(3)
-While most people with lupus live a normal life span, however, 10-15% pass away prematurely due to complications.(3)
For more information on lupus visit http://www.lupus.org/.
Check out all of the trucks in Road Scholar Transport’s awareness campaign here.
(1)http://www.lupus.org/answers/entry/what-is-lupus
(2)http://www.lupus.org/answers/entry/forms-of-lupus
(3)http://www.lupus.org/about/statistics-on-lupus
