Riley’s Story

rileyOver the past seven years, Riley Callen has had three separate craniotomies to remove two benign (non-cancerous) brainstem based tumors. Through her experiences, she has developed a passion for raising awareness in support of brain tumor and cerebrovascular disease research.  Soon after Riley’s 2015 craniotomy, while she was still recovering in the hospital, she voiced her desire to do something about what kept happening to her. At first, she had a hard time explaining what it was she wanted to do, but it soon became apparent that she wanted to take control of what was happening to her. She was tired of standing by nervously wondering each time she has a routine MRI if it is going to change her life again. What she wanted was to become a part of the solution.  She wanted to help find a cure, not just for herself, but for everyone out there with the same diagnosis. None of us know what the future holds, but the future prospect of recurrence has inspired Riley on this quest.

This effort is called Be Brave For Life.

Riley’s tumors, vascular lesions called cavernous malformations, have both been located deep within her brainstem. Brainstem tumors are extremely challenging to remove because the brainstem controls all vital functions of our bodies, such as breathing and heart rate.  Often patients who undergo a craniotomy to resect a brainstem tumor are left with permanent neurological damage. Riley has suffered such damage. Our goal is to raise money for brain tumor and cerebrovascular disease awareness and research, as well as for the associated risks related to their removal.

Since our founding we have held three amazing Hike-A-Thon’s – in October 2015, 2016 and 2017. These events have been incredibly successful with hundreds of registrants at each, hiking the over 30 miles of trails throughout the Merck Forest. With the help of our amazing sponsors and donors, we have been able to raise over $400,000 and truly make a difference in the lives of individuals suffering from brain tumors. We are a 501c3 non-profit charity, so any donations we receive are fully tax deductible. We at Be Brave For Life could not be prouder of what we have achieved thus far, and we could not be more excited about our future!  See the Accomplishments tab for specifics on the amazing research initiatives we are helping to fund.

Awards and Honors

This September 2017, Riley was honored as a recipient of The Gloria Barron Prize for Young Heroes.  The Barron Prize celebrates inspiring, public-spirited young people from diverse backgrounds all across North America. Each year, the Barron Prize honors 25 outstanding young leaders ages 8 to 18 who have made a significant positive difference to people and the environment.

On February 7, 2017, the Prudential Spirit of Community Awards program, which is the largest youth recognition program in the US based exclusively on volunteer community service, announced Riley as one of two Vermont recipients for their Spirit of Community Award. Riley received a scholarship and an engraved silver medallion.  On May 6, 2017 she joined the top two honorees from each of the other states and the District of Columbia in Washington D.C., for a 4 day, all expense paid, trip to honor their stewardship. At the event, she was chosen as one of ten National Honorees and received an additional scholarship of $10,000 ($5,000 for her charity and $5,000 to be used for higher education).  Since its inception in 1995, this program has recognized more than 115,000 young people who’ve made a difference – and inspired countless others to consider how they might contribute to their communities.

On November 3, 2016, Riley was honored at the Association of Fundraising Professionals Northern New England (AFP NNE) Chapter Annual Conference in Portland, Maine for her work with Be Brave For Life. The AFP-Demont Youth in Philanthropy (YIP) Committee unanimously selected Riley as the 2016 YIP Award winner and recipient of a scholarship. The award recognizes service by an individual aged 10 to 17 who demonstrates outstanding commitment to the community through direct financial support, development of charitable programs, volunteering, and leadership in philanthropy. In a joint statement, AFP-NNE President Jeff Fuller and Robert Demont, Demont Associates President, said “Sponsorship of this award provides us and our colleagues with as much satisfaction as anything we do each year, so we are honored to highlight Riley’s commitment to leading others in her humble way.”

How It All Began:

During the summer of 2011 when Riley Callen was only 8 years old, she woke up one morning with partial left side facial paralysis.  An MRI revealed that Riley had a cavernous hemangioma in her brain stem, a rare vascular brain tumor, that had hemorrhaged and caused the weakness in her face.  After a failed craniotomy in NY in August of 2011, her parents found Dr. Robert Spetzler in Arizona, a world renown vascular neurosurgeon, to operate on her that October.  He was successful in removing the tumor, but Riley was given a 10% chance of recurrence at some point in her life.  Since the tumor was located within her brain stem, the part of the brain that houses many of the control centres for vital body functions, as a result of the surgery, Riley lost hearing in her left ear as well as her ability to move the left side of her face.  Five reconstruction surgeries later, Riley has a platinum weight in her left eyelid so that she can close that eye; a muscle and nerve transfer from her foot and leg to the left side of her face, so that she can smile; and a hearing implant in her skull, so that she can hear. Despite all these surgeries, Riley is the most upbeat and positive young lady you can imagine.

Unfortunately, in November of 2014 a routine MRI revealed that the tumor had grown back.  In early January 2015 Dr. Spetzler went back into her brain stem and removed the cavernous hemangioma.  While we believe the operation was a success, Riley spent the next four months in and out of Massachusetts General Hospital, fighting chemical meningitis.  She also now has double vision and has loss sensation and the ability to differentiate temperatures on her right side. Regardless, she continues to live a normal, active and happy life.  Her spirit has not been deterred.

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