The Butterfly Challenge is a way that I decided to embrace change and develop a process for living with Neurofibromatosis. I was born in 1969 with a craniofacial deformity caused by neurofibroma tumors. Surgery for tumor removal and facial reconstruction began when I was 9 months old and continued annually into my adult life.

Although I understood the reasons and many improvements were made, I stopped 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 lived a regular life. I traveled, met my husband, continued my education and created an enriched life in the Tampa Bay area.

In 2005 life suddenly changed after an MRI revealed massive tumor growth in my sinuses and optic nerve. Several surgeries were required back to back to begin as soon as possible with the hopes of saving my vision, removing tumors and reconstructing my face once again.  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 this process.

Three months prior to this devastating news I was at the peak of health completing my first triathlon.  Little did I know that this strategy of training would be the roadmap needed for a continued battle with Neurofibromatosis. So that is what I did, I trained for the series of surgeries the way I would for a triathlon. I built a support team, ran, biked, swam, studied nutrition and yoga then created the most important race of my life, The Butterfly Challenge.

For the first time I allowed myself to be photographed throughout the surgical 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.

Butterfly Challenge is here to impact the awareness of Neurofibromatosis through Information, Education and Inspiration.  This mission is fulfilled by racing in triathlon & running events with the NF Endurance Team bringing awareness and funding to the Children’s Tumor Foundation. In addition I do public speaking events to educate and inspire people to overcome adversity and meet their own challenges with courage and determination.

 I get up every day with the purpose of living life to its full potential. Thriving in society with a facial deformity 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 remains 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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