Days 587 & 588 – Drumroll, Please…

Everett’s follow up trip to Duke was a complete whirlwind! It was truly wonderful to be able to see so many doctors, nurses, and staff who genuinely love our son and were amazed at Everett’s physical transformation. Over the past 6 months, he’s grown 6cm and lost all “the fluffiness” so he no longer looks like a marshmallow man…barely anyone even recognized him!

After an extraordinarily long and tumultuous posttransplant journey, we are thrilled to be able to announce our little warrior finally has a normal immune system. Yes, you read that correctly…a normal immune system!!!

His transplant primary doctor, Dr. Prasad, admitted that Everett’s recovery was one of the most dramatic during his entire career. Our little guy was able to overcome several significant (and rare) side effects and there were times when his medical team was unsure if he would ever recover, so we certainly consider ourselves to be blessed. Dr. Prasad has instructed us to discontinue more than half of his medications and we are under strict orders to make sure Everett starts going out and getting dirty!

The transplant was not a cure for PMD and Everett will always struggle with the challenges, but we are eternally grateful to Duke for their devotion to researching this devastating disease and improving Everett’s quality of life.

We were thrilled to return home to Maryland this evening and celebrate this major milestone with the Big Sisters. Our family has endured isolation for quite a long time and we are certainly looking forward to enjoying life much more! Thank you for your continued prayers and support!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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