The Butterfly Challenge is a way that I decided to embrace change in my life and to develop a process for living with Neurofibromatosis. I was born in 1969 outside of Washington, D.C. with a craniofacial deformity caused from neurofibroma tumors. Surgery for tumor removal and facial reconstruction began at John’s Hopkins Hospital when I was 9 months old and continued annually into my adult life. Although I understood the reasons and many improvements were made, I decided to take a well-deserved break from this process in 1992. The tumors were dormant and I realized that the people that loved me loved me and more surgery was not going to change that. I was happy and satisfied with myself despite that more could have been done to create symmetry in my face. During this time I traveled, continued my education, married my husband and created an enriched life in the Tampa Bay area surrounded by wonderful friends and family.

In 2005 I began to notice facial changes, pressure behind my right eye, pain, and neur ological symptoms. The search began to find a surgeon knowledgeable about N.F. and experienced with craniofacial surgery. During this process it was discovered that the tumors had indeed changed and were damaging the structure of my face and optic nerve. This news was shocking, as we had always been told that the tumors would not change nor would new tumors develop. This information was outdated and I quickly realized that the most important element that had developed over the past 13 years was more knowledge about Neurofibromatosis. Working in the medical field , I understand rapid discoveries and the practice of medicine. Being stagnant to these changes does not allow for improvement. With new information and one of the best surgeons in the world, I received news of the battle that was ahead. Several surgeries back to back to begin as soon as possible. The tumor on my optic nerve was putting me at risk for losing my eye, the tumors in my face had caused a great deal of damage during their growth and I have 2 small tumors in my brain which are inoperable. The wind was knocked out of me and I felt uncertain for the first time in my life. My entire world was about to change and I needed to come up with a plan for coping with and surviving these challenges. It was going to require all of my strength, physical, mental and spiritual to make it through this process. Not only for me, but also for my friends & family.

After several weeks of depression and worry, I literally mourned the loss of how I had planned my life to be in 2006, then developed a new plan. I will approach these surgeries like a triathlon. A few months prior to this news, I fulfilled a lifelong dream of completing my first triathlon. Little did I know that this strategy of training would be the roadmap for preparing for my continued journey with N.F. So that’s what I did. I swam, biked, walked, ran, focused on nutrician, meditated and built a support staff.

Any race worth participating in has to be for a good cause and have a great name. So The Butterfly Challenge was born. The Butterfly represents grace, change and beauty. Challenge represents obstacles to be overcome. For the first time in my life I have allowed myself to be photographed through this process and have chosen to share segments of my journal in hopes that it will help people understand what it is like to live with Neurofibromatosis.

Since the creation of The Butterfly Challenge, I have successfully undergone 3 surgeries (totaling 20) and continued to compete in triathlons and athletic events during recovery periods. The Butterfly Challenge has grown into a non-profit organization with a racing team, fundraising events, public speaking opportunities, and a source of inspiration to many. It is and continues to be my goal to survive this process, to thrive in this process and be an advocate for other families battleling this disease. We are here to make great change and impact the awareness of Neurofibromatosis through information, education, and inspiration. Battle may seem like a strong word, but I’m here to tell you that I get up every day with the purpose of living my life to it’s full potential. Thriving in society with N.F. is no easy task, most things worth having do not come easily and anything is possible. My life is rich with accomplishments, friends, family and a deep sense of myself. My spirit is intact and will continue to flourish.

Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom. --MarcelProust

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