Meet Ezera Jase, but be careful he has a way of pulling at your heartstrings!
Ezera, our extremely intelligent, humorous, and affectionate six-year-old was recently diagnosed with ALD. ALD is a nasty, rare, genetic disease that we knew lurked in our family's DNA. Despite our hopes and faith, Ezera is affected.
There were no newborn screenings being performed back in 2012, at least where he was born. My husband and I conceived this child and we started our journey in pure faith as we were aware of what could happen. Through love, Ezera grew and developed just like every other little 'buddy' prominent in other families. In Mid 2018, the blood tests came back abnormal for ALD.
After weighing the benefits and outcomes we made the careful decision to give our boy a chance at life—something ALD and time is completely against. Ezera was also diagnosed with a rare lung condition which entailed a biopsy in January 2019. The findings were of fat deposits not consistent with any ALD issue and very rare of its own accord.
Most of January included 35 to 40 hours a week in the Duke Children’s clinic for the work up process to find out his candidacy for a bone marrow transplant.
On February 12, Ezera had a central line-IV to his heart and G.I. tube installed through surgery. To prepare for the process, we checked in to the pediatric bone marrow transplant unit at Duke University’s Children’s Hospital in Durham North Carolina on February 22nd.
Ezera received his new cells from a cord blood donor on March 6; additional cells were administered through spinal tap on April 10–as per his BMT process schedule.
This is the most difficult and painful experience any of us have ever endured. For this process, our family has been displaced from our home and lost employment and continue to reside at the Ronald McDonald house and at the hospital as caregivers for our son.
Soon we will find our new ‘normal’ and begin to adapt.... there are many lingering questions—hoping brighter days are just around the corner.
Please share as we continue our battle and #RallyForEzera