Thank you for stopping by! My name is Jackson Baldwin, I just turned one and I live in Johnstown, New York with my mother. I have a severe form of Epidermolysis Bullosa (EB), called Recessive Dystrophic EB. This condition has in me in constant pain every single moment of my life. I wear bandages from head to toe to protect my delicate skin. It is so severe, that my mother is told I need a bone marrow transplant very soon at the University of Minnesota to try to save me. with hopes that I can have this procedure so I can one day be able to play outside, ride a bike or even walk without fear that I will get blisters all over
My family fought really hard to get my procedure approved by NYS Medicaid since it was caught up in the system for months! On Tuesday, March 13, 2012, we launched this web site and the ‘Save Jax’ campaign and it worked! With all of your support, along with my great lawmakers and local news media, my story and its urgency became front and center, and my family was informed on Friday, March 16, that my bone marrow transplant will be covered by New York State Medicaid. That following week, University of Minnesota informed us that the hospital, and all contracting groups have each quickly worked out agreements to accept our insurance. My family went there on April 9-12 for initial consultation and testing. Dr. Tolar said that I would be a perfect fit for the transplant and soon after they let us know that they found the perfect donor!
After moving down to Minnesota for my much needed transplant, and weeks of preparation and chemotherapy, I received my life-saving transplant at the Amplatz Children’s Hospital. And currently discharged for the long road of recovery at the Ronald McDonald House near the hospital. We are so happy for the outpouring of support we found here online and with our family and friends. I couldn’t have made it this far without you, and I hope you continue to follow my story.
You can read all about are struggles with the system, by clicking on my ‘I’m Famous’ page with all the media stories about it here.
You can follow along as my mommy frequently posts updates on our blog site here, and on facebook at http://facebook.com/savejax