It is amazing how one’s life can change with the simple click of the mouse, how one story can inspire in so many ways. I am often asked why I care so much about EB, and I am always so unsure of how to answer that because there really is not explanation that would be adequate. There was something about Tripp’s story that not only captivated me, but it grabbed me in ways that cannot really be expressed in words. When I embarked on this journey I was never prepared for the ways in which my heart would be touched, how my life would never be the same. This goes beyond a mother’s beautiful and poignant blog about her son’s heroic fight against a disorder that had no cure. Tripp was more than pictures and videos, he was a little boy and he was suffering in agony every day. This agony is one that is unfathomable to most of us…it is an agony that rocked my core. This is a suffering that no child or adult should ever have to endure…ever. I will never forget his trembling in anxiety, his tears, the reality of his pain. It is forever with me and it is why I will continue to do what I do.
In my life, I have always had a strong desire to make a difference some how. Tripp inspired me to start This Little Light as a way to help families who were dealing with a catastrophic or life altering diagnosis like EB in hopes that I would be able to provide them with a way to honor their child. I have discovered that this endeavor is far beyond just taking pictures. These families are giving me a gift by inviting me in to capture some of the most intimate moments, moments that are rarely seen by others. I have had the opportunity to meet so many amazing people and share my experiences, offering a perspective that many do not have. I cannot begin to express the ways I have been humbled and inspired each new connection, each new friendship.
As much as I love capturing these moments in time, There is so much more to be done…EB is so complex and there are some many aspects in which there is a great need for others to be a voice. Raising awareness is so incredibly important for many reasons. Naturally those in the EB community want people to have a better understanding of EB, but with out awareness there are also no funds for research, research that is vital. That was one of the reasons that there needed to be a campaign that would allow people from all over to raise awareness in their communities while supporting research. Something that would inspire others the way that I had been inspired in hopes of creating waves of awareness across the country. I wanted there to be a way for people to become involved and be a voice and this was a really great opportunity. It has been such an honor to be able to support Dr. Tolar and the team at the University of Minnesota Amplatz Children’s Hospital.
Over the last year I have had the pleasure of working with some amazing advocates assisting families, raising awareness and supporting the research that is so vital in finding a cure for EB. I have had the opportunity to take part in amazing events such as Time to Fly and Aubrey’s 5k, where collectively over $50, 000 dollars were raised for research.
The path of advocacy has changed my life in so many ways. It is with joy and love that I have chosen this path. I am grateful for the profound impact it has had and the difference that each encounter has made in my life.