B The Difference

November 3, 2014 at 10:05 am 4 comments

B stands for Brandon. B stands for Brave. B stands for Beloved. B stands for Brilliant. For those lucky enough to know Brandon Merritt, B stands for BLESSED!

The 9-year-old Brandon that we first met was a happy-go-lucky kid, full of life and overflowing love. Always eager to take on life at a heightened level, Brandon was a mature, sensitive and wonderful boy. A mensch. He was a diehard sports fanatic, a member of the Red Sox Nation, a Miami Hurricanes Superfan, a Florida Panthers 93’er and Manchester United’s number 1 fan from across the pond. Growing up Brandon could rattle off sports facts and statistics like an encyclopedia. It never occurred to us that Brandon faced daily health challenges. It only occurred to us that beneath Brandon’s passion for sports and love for life, was an old soul that we were grateful to know.

Brandon was immersed in his family centric unit that you must consider yourselves fortunate to call your friends. Loving and protective older sisters Stephanie and Jessica, and parents Debbie and Ralph are the type of family you choose to surround yourselves with because of their outpouring of love, warmth and “all in” spirit.

Brandon the boy became Brandon the young man whose zest for life grew along with his years. “Brandon, lovingly referred to as “B” was the embodiment of a “Gentle Giant.””As he grew taller and taller, his heart grew larger and larger, with limitless love for those he held dearly as well as every living creature on the planet, including his dog, Cooper.” A young spirit housing an old soul. Brandon’s favorite animal was a turtle ~ not at all surprising as the turtle encompassed his character and demeanor. Turtles, by the way, do not have the ability to move backwards, ONLY FORWARD. Exactly like B, who moved forward, at his own pace, every single day.

While B loved growing up in his hometown in South Florida, surrounded by childhood friends and family, he traded the heat and humidity for the mountains of Beaver Creek, Colorado. Working as a Guest Service employee for The Beaver Creek Resorts in the winter and at The Club at Cordillera and Sonnenalp Golf Courses in the summer, he found a second family and his happy place in the mountains. Surrounded by his big sisters, family and friends, (old and new,) the slower pace of life in Colorado, the culture, the warm and welcoming people and the true beauty of the mountains were Brandon’s daily injection of life.

While Brandon was diagnosed with NF1, Neurofibromatosis (NF) early in life, people in his home-away-from-home accepted him for who he was despite his physical limitations. His outstanding sense of humor and strong sense of self would have Brandon joke that his limp did not stand out amongst those walking around with ski boots… “everyone walks funny in ski boots!”

Brandon Merritt lived his 22 years with more life than some who live a lifetime. Life is not measured by the number of breaths we take, but by the moments that take our breath away.” Brandon created those breathtaking moments for all of us. He also appreciated and lived for the ones that took his breath away like a fox crossing his path, a hummingbird drinking sweet nectar from a flower box and the wind blowing precisely at the right moment just to name a few.

While “B” hand-carved snow sculptures popped up all over the mountains in Colorado to honor his memory, Brandon’s legacy will be carried out by his family, and countless friends who were touched by a human being whose rare qualities are embedded in our hearts forever. And B will live on forever.

B never stood for blue. B never stood for broken-spirited. B never stood for blame. B never stood for bitter. B stands for Brandon. B stands for Brave. B stands for Beloved. B stands for Brilliant. For those lucky enough to know Brandon Merritt, B stands for BLESSED!

Brandon’s battle against Neurofibromatosis (NF), a term for three distinct medical disorders: NF1, NF2, and Schwannomatosis, has become The Merritt’s continued battle in honor of Brandon. It must become our battle through supporting B THE DIFFERENCE and B HAPPY, raising awareness, raising financial support for research toward a cure, and for creating a quality of life for those inflicted with NF, their families and caretakers.

http://bthedifference.org/

https://www.facebook.com/BtheDiff

B THE DIFFERENCE was founded in October 2011 by Stephanie and Jessica Merritt to honor the memory of their brother, Brandon. When Brandon was 8 months old he was diagnosed with Neurofibromatosis (NF), a disease targeting the nervous system by developing tumors on nerve endings. Brandon never asked “Why me?” as NF compromised his ability to play sports and interact with children his age—if anything his physical disabilities allowed his personality to become incredibly nurturing and sensitive. B THE DIFFERENCE, the name and trademark of the Brandon Merritt Charitable Foundation, is not just a catchy name—we truly strive to “B THE DIFFERENCE” in the fight for a cure for Neurofibromatosis.

Neurofibromatosis (NF), is a term for three distinct medical disorders: NF1, NF2, and Schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.
NF can occur both spontaneously or genetically and affects 1 in 3,000 births.
NF is more prevalent than Cystic Fibrosis, Muscular Dystrophy & Huntington’s Disease combined.
NF is worldwide, affects both sexes equally and has no particular racial, geographic or ethnic distribution.
NF can lead to disfigurement, blindness, skeletal abnormalities, dermal, brain and spine tumors, loss of limbs, severe balance problems, malignancies, learning disabilities, deafness and intense pain.
NF research has grown exponentially in the last 20 years spearheaded by The Children’s Tumor Foundation.
All forms of NF are genetic disorders. They can be either inherited from a parent who has NF or the result of a “spontaneous mutation” in the sperm or egg cell. Each child of a parent with NF has a 50% chance of inheriting the gene and developing NF–the type of NF inherited is always the same as the parent, although the severity of the manifestations may differ. NF is worldwide in distribution, affecting both sexes equally and has no racial, geographic, or ethnic distribution. Therefore, NF can appear in any family.
These facts were taken from the Facts and Statistics page of the Children’s Tumor Foundation website. The Children’s Tumor Foundation is a non-profit 501©(3) medical foundation, dedicated to improving the health and well-being of individuals and families affected by the Neurofibromatoses (NF).

WHERE THE MONEY GOES

We fundraise in support of Children’s Tumor Foundation (CTF);  Children’s Tumor Foundation (CTF)the world’s largest non-government organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF). CTF also is dedicated to improving the health and well-being of individuals and families affected by NF; the disease Brandon bravely battled. We are lucky to have established such a wonderful relationship with the CTF and look forward to helping them as they work hand in hand with the leading medical researchers across the globe in the advancement of medication and treatment for NF sufferers.

B HAPPY is a program we have established which allows individuals with Neurofibromatosis and their families to enjoy a break from the difficult and emotionally straining daily life with NF; similar to the popular and successful Make-A-Wish Foundation. We learned during Brandon’s battle with NF that simple diversions go a very long way as they provide anticipation, participation and memories that last a lifetime. Beaver Creek, Colorado and the surrounding valley was Brandon’s home and has so much to offer that we would like to share with others.
 B HAPPY is proud to be partnering with Elevation Resort Residences.

WE THANK YOU

From all of us at B THE DIFFERENCE, thank you so much for supporting us and our endeavors! We’re truly blessed to have such amazing people support our cause! We cannot dream of being successful without the overwhelming generosity we receive from our friends, extended family, and local and national businesses.
Hopefully, there will be a cure for NF within our lifetime so others don’t have to suffer like Brandon did. One day at a time, one event at a time, we are striving to B THE DIFFERENCE in the fight for a cure. We know you have charities close to your heart, and we will continue to work hard so we can remain one of them. Join us at B THE DIFFERENCE and make a donation today.All donations benefit B THE DIFFERENCE as we strive to B THE DIFFERENCE in the lives of those inflicted with this disease. We support organizations dedicated to researching treatment and a cure for Neurofibromatosis and to assist individuals who are currently battling this disease. Your tax-deductible donation is appreciated.

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4 Comments Add your own

  • 1. Aubrey  |  November 3, 2014 at 5:26 pm

    This is fantastic! I never knew that NF existed and I was surprised to read that it is even more common than CF or Huntington’s. B The Difference sounds like a wonderful charity!

    Reply
    • 2. jaynebonilla  |  November 3, 2014 at 5:44 pm

      I’m so glad Brandon’s story touched you❤️ Thank you for reading.

      Reply
  • 3. Vickie  |  November 3, 2014 at 9:10 pm

    Beautifully written for an outstanding young man

    Reply
  • 4. Kimily24  |  November 7, 2014 at 9:50 pm

    Reblogged this on Kimily24 and commented:
    B is someone I knew personally, someone who I think about often, someone who gave me a PASSION to do my part to help find a cure for NF! B the Difference!!!!!!

    Reply

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