The Devastating News…

On October 26, 2016, we received devastating news that forever changed our little family. We were informed after receiving the results of his newborn screen and follow up testing, that our precious baby boy has an extremely rare and severe genetic disorder. When left untreated and after symptoms have started outwardly occurring, this disease is fatal. We are very fortunate that we caught it early, as Missouri is only 1 of 3 states that currently test for it in the newborn screen. That same evening, were put in touch with the specialist at Duke University who piloted the treatment for the condition. Ezra will need to receive a stem cell transplant in a couple of weeks, preceded by chemotherapy, which is a very lengthy (we are talking months) and overwhelming process, especially for such a little one. The day after receiving the news we packed what we could and have been here at Duke ever since, where he is receiving the best care. There are still a lot of unknowns in this process and tests to be run before his transplant. We are asking for relentless prayers for our brave and precious little boy as we continue on this journey, as well as for the specialists and hospital staff caring for him. We are doing our best to trust in God’s plan and remember his faithfulness. We have already seen His hand in the overwhelming support from our friends and family.


One thought on “The Devastating News…

  1. Heavenly Father, forgive my inequity and transgression. Lord I ask for healing for baby Ezra. I ask for grace and comfort for everyone involved in this suffering. Please Lord, give this baby healing Lord. Hear my prayers. In Jesus name, Amen.

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