About

On October 26, 2016 our son was diagnosed with an extremely rare genetic disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system. Without treatment, this disease is fatal. When caught early enough (before symptoms occur), it can be treated through a stem cell transplant. This disease can be detected through a newborn screen, however only 3 states currently test for it. By God’s grace, Missouri is one of them and we were able to get Ezra to Duke University a day after finding out for him to receive treatment before he exhibited any symptoms. We will remain in North Caroline at Duke Medical Center for the next several months as he starts the treatment process which includes chemotherapy, the stem cell transplant and recovery. We are asking for many relentless prayers, as this will be a long road for our baby ¬†boy and our family.

Many have generously asked about financial assistance for Ezra’s transplant expenses. To do so, you can go to:

http://cota.donorpages.com/PatientOnlineDonation/COTAforTeamEzraB

Blessings,

R&K