Clayton’s Story

Site created on January 17, 2021

Hey guys! As some of you are already aware, Clayton, Jes and I are headed to Boston Children’s Hospital on Tuesday for a couple of weeks. He’s finally getting some much needed surgery and we’re feeling optimistic about it all. We set up this Caring Bridge to keep everyone in the loop.

Just to catch up: Clayton has a rare genetic mutation called Weidmann-Steiner Syndrome and while there are a lot of issues associated with it, the main takeaway is that he’s got a genetic mutation not unlike the X-Men. 

The good news is our little super hero is a happy little man who’s about to get some Tony Stark level work done on his chest while Jes and I will finally get to play Risk and watch Criterion movies without interruption. Please pray for our little man!

Newest Update

Journal entry by Jessica Enes

Hello everyone!! Tomorrow marks the one year anniversary of Clayton’s surgery in Boston.  Thinking back to all the emotions leading up to that event, the almost two weeks away from the girls, the way the community came to our help with an outpouring of support and the scary unknowns for the future all flood back.  These last two years have been a rollercoaster for everyone in the world in so many ways.  It has been full of trials but also blessings. School time unfortunately brought  so many colds Clayton was struggling to gain weight and overcome his feeding aversion.  The last hoorah for the year in our family was the delta variant just before Thanksgiving.  However, after a scary week we all recovered and it became a miracle for Clayton.  He had become so hungry that he began to fully and completely eat on his own! We have not used his G-tube since the days he was sick with COVID.  He is growing and thriving!  Who would have thought that COVID would be such a catalyst for his development!  Each day we are in awe of the strides he is making with physical therapy and eating.  If you saw him eat the squash risotto I made for dinner today you would never think he ever had a problem!  We know so many of you have kept us all in your prayers and have reached out to see how Clayton has been doing and we are so thankful and appreciative.  More challenges will come as they do with all children but we know that we have been blessed with a miraculous and unexpected recovery.  Thanks be to God and all of you!  Prayers for a healthy year for everyone!!
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