UBE2A Brothers!

In honor of yesterday's "World Rare Disease Day" I wanted to share a little bit about the connections we've been able to make since Abram was first diagnosed with UBE2A Deficiency Syndrome.

It's been a little over 2 years since we got the diagnosis of UBE2A. Abram's case was the first that the University of Iowa, the University of Chicago and Mayo Clinic had ever seen! I was relieved to finally have an answer and immediately tried finding other families through Abe's blog and lots of digging!

Now, we know TEN other families from around the globe. I cannot tell you how amazing it is to have a group of moms and dads who can help answer questions and offer guidance. When doctors and geneticists admit that they are "learning from Abram" it is very important and special that we have these other families to rely on for medical information as they have or are currently already living it.  

These phenomenal moms and dads have helped us understand certain parts of Abram's condition and have alerted us to things that our doctors didn't even know to look out for! When it comes to rare genetic disorders, how lucky are we to have the power of the internet to connect us all?

A extra special "thank you" to Tracey Stedman Harris who lost her sweet boy Nathan and continues to help guide families like ours! You can read Nathan's story on the UBE2A Brothers. 

Here are some of their sweet faces and I'm sure you'll agree that all of our boys share that amazing award winning grin! <3<3
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