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.
I know I personally don’t know what money is, but the doctors tell my Mommy that money is really necessary for the long recovery process of my bone marrow transplant, while having to pick up where we currently live in New York and spend a good part of a year living in Minnesota, the large costs that will be needed for all the woundcare and medications that aren’t covered by my insurance, and everything else. So I was thinking, if we can have everyone here donate just a few dollars (or more, if you would like) my family, especially my mommy, can focus on taking care of me and not worrying about the large amount of bills stacking up.
The Jackson Baldwin Charitable Trust has been classified as a trust fund by the IRS and has been assigned an EIN number for tax purposes from the IRS. The EIN Number will be provided on request.
With the outcry of support, we have been getting requests from people wanting to host small or large fundraisers in their own community for Jackson! Jax supporters have contacted us already wanting to do bake sales, car washes, and corporate events too. We are very thankful to each and every one of you that wants to do this for Jackson. What a great way to help, and the family not only encourages these efforts but would like to help in any way that they can to make it a success.
We would be happy to list your event on our websites, and we would be happy to share it on our ‘Save Jax’ facebook page too. We can provide you with ‘Save Jax’ logo, and you can use the pictures of Jackson as well. Plus, you will be set up with a ‘Team Jax’ member that will be your direct contact to answer any questions that you have.
Interested in hosting your own event? You can start by filling out the form below:
Please help me tell the world about my story and if ONE person tells TEN more people….My mommy tells me (she’s much better at math than I am ) that it just might be enough of an impact to get me to The University of Minnesota to save my life. Will you join in?