By Christie Zink
From her Blog: I Refuse EB
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Epidermolysis Bullosa…I remember the first time I ever came across those words. I did not realize at the time that those words would impact me so profoundly. It was late at night and I happened to see the link to a blog on a Facebook page that I had started following a short time earlier. There was this beautiful boy…Tripp Roth. His mother’s words totally captivated me in a way that I really cannot describe. I spent the entire night reading the blog from the very beginning. This was the beginning of my journey into advocacy. Naturally I, like many others, scoured the web trying to find out every thing that I could about EB. All I really knew at the time was that this was a rare devastating disorder that caused tremendous suffering. It had an extremely high mortality rate and there was NO CURE. That is right, there is no cure…those two words absolutely broke my heart. The thought that these children are born with no hope shattered me to my very core. No hope…how could that possibly be? What I did not know at the time was that there was hope. There was ground breaking research being done to find a cure for EB, and this research, it was being done right here in Minnesota. Researchers at the University of Minnesota were conducting clinical trials using adult bone marrow. Little by little, they were making a difference in the lives of these precious children, they could save their lives and give them hope for some normalcy. At the heart of this research is Dr. Jakub Tolar…
As a pediatric oncologist, Jakub Tolar, M.D., Ph.D., sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch. “This is one of the most awful diseases I’ve ever seen,” Tolar says. While missing patches of skin are one of the most outwardly apparent signs of the disease, they’re only part of the complex difficulties these children and their families face. With an esophagus full of lesions, it becomes painful to eat. And because of the body’s constant but flawed efforts to repair itself, fingers can fuse together. Eventually, usually by age 20, these children will die of skin cancer. But not if Tolar has his way. A member of the pioneering University of Minnesota team offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer alternative (see sidebar). “It is high-intensity, potentially high-yield, very novel research,” Tolar says.
Nicole Endres (June 7, 2012) Meeting the Challenge from http://blog.lib.umn.edu/mmf/news/givingmatters/2012/meeting-the-challenge.html
This research is so incredibly critical and and it has been a privilege to have the opportunity to support Dr. Tolar and his team. I can say with the utmost certainty that he is one of the most inspiring people I have ever encountered. His genuine compassion for his patients and his dedication to giving them a better life is truly something that is so very rare. This goes far beyond doing a job….this is his life’s work, this is his passion. He truly cares about these kids and he wants more than anything to be able to give them a chance. These kids are at the very heart of everything he does. Dr. Tolar is continuously striving to make life better for these kids despite the challenges and setbacks. Because of this dedication, tremendous strides are being made and each new day brings them closer to finding a cure. This research relies heavily on grants and donations and this year the Minnesota Medical Foundation at the University of Minnesota was presented with an incredible opportunity by means of a substantial matching grant. The Epidermolysis Bullosa Medical Research Foundation and the Jackson Gabriel Silver Foundation have committed to contributing up to $450,000, matching gifts from other donors received by December 31, 2012, dollar for dollar. The response to this has been incredible with donations of approximately $325,000, an amount that means a great deal to the entire team at the U of M. However there is still $125,000 that can be raised that will be matched! If all the dollars are raised, that would mean $900,000 being dedicated to this vital research and that is nothing short of amazing. Just take a look at some of the lives that have already been changed thanks to this program… (Click on the images to read their story.)
 Fallyn |
 Daylon |
 Charlie |
 Keric |
 Payton |
I find myself looking at these precious faces and seeing the light in their eyes, the joy and the happiness. Then I imagine their life before their transplant, I imagine the suffering that these children were forced to endure and the frustration and sadness of their parents when faced with this reality. No child should ever have to endure the pain of EB and no parent should have to watch as EB ravages their child inside and out. Every child deserves hope, it is a beautiful gift and it is now a reality for kids with EB thanks to this very special team. I hope that you will join me in supporting Dr. Tolar and fighting for a cure…providing hope where once there was none. If you would like to show your support you can make a one time donation or an ongoing pledge through Pioneering Unique Cures for Kids, an organization dedicated to raising funds for this vital research. To donate, click HERE Remember, every dollar counts TWICE! Thank you for helping make a difference and helping to end the needless suffering that is caused by EB.
Hello, I am a wife, mother, photographer and advocate. I have been blessed with an incredible opportunity to use my creative passion as a business and as a way to bring joy into the lives of others. Through the art of photography, I am able to capture special moments in time creating an invaluable keepsake.
In my life, I have always had a strong desire to make a difference some how. I started This Little Light as a way to help families who were dealing with a catastrophic or life altering diagnosis or infant loss 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. Each of these families is giving me a gift by inviting me in to capture some of the most intimate moments, moments that are rarely seen by others. Allowing me to bond with their child, a connection that is quite indescribable. I am forever blessed that these families allow me to be a part of their journey. It is a
