Road to Answers #8 (March 22, 1:30 pm)

Extra. It has 3 definitions. 1- “added to an existing or usual amount or number; additional”; 2- “excessive or extravagant”; 3- “doing the absolute most”.

Our Caleb is definitely extra. In all the ways.

We met with the genetic counselor from Cincinnati. Genetically, Caleb is extra. Specifically, he has a 1p36.11 duplication. It is so rare that it doesn’t have a name. It is so rare that very little is known about it. It is so rare that only 4 other individuals have been identified in the genetics database. But, so far we know that it comes with developmental and language delays, hand and foot anomalies, constipation and unique facial features. It does not have any life threatening conditions associated with it. It does not have a shortened life expectancy.

Praise Jesus.

Caleb is so special. We have always known that. Sarah (our genetic counselor) explained that this duplication happened right at conception. And that it is “de novo”. That means it’s new. It is not hereditary. So cool.

We are so thankful for God’s great provision all along the way in our journey with Caleb. Even without answers. In His great (and extra! goodness) he has provided doctors and therapists and teachers and coaches and friends and family. He has provided prayer warriors. He has provided a support team. And we love each and every one of you. Thank you. From the very bottom of our hearts.

The journey continues. And God will continue to provide. Please pray for endurance for all of us. Please pray that we are drawn even closer to the Lord. Please pray for continued health improvements for Caleb. Please pray that we can be an encouragement to other families in similar circumstances and more importantly that we can shine our lights SO brightly for Jesus!

Sidenote: I advise not googling Caleb’s duplication. There is a genetic condition known as Coffin-Siris disease. It also effects the gene mentioned above, along with other genes. So, a lot of what you come across on the internet is about Coffin-Siris, which Caleb does not have.