Big Update

It has been a while since we have posted an update on Clara Faith.  She has had an amazing 2019 so far.  She continues to make great progress in walking and is becoming much more vocal and able to talk.

In February, she had another Swallow Study to check her progress.  She showed so much

improvement, she was cleared to drink anything she wants; anytime she wants.  The previous surgery she had to repair her throat was a success and there is no more danger of aspiration when drinking liquids.

Her next milestone was being permanently dismissed by her cardiologist.  We will miss him.  He was one of our favorite doctors.  The 2 small holes in her heart have healed.

In April, we had a yearly visit with Emory Genetics.  About a year and a half ago, they placed Clara Faith's gene samples in their worldwide database to see if there were any matches that would help treat her.  Last year, we had no results from the test.

This year, her doctor was able to identify an issue with one of her chromosomes.  One of the stems on one of her chromosomes is broken/bent.  It's very rare.  Her doctor calls Clara Faith her mystery, and for good reason.  For this specific chromosome with this specific problem, Clara Faith is now 1 of 4 known cases in the world.  Yes, 1 of 4.  This is so rare and so new, it does not have a name yet.

So what does it mean?  The other 3 cases all have similar symptoms:  hypothyroid, low muscle tone, etc.  Some symptoms may be more pronounced than others in the individual, but there are similarities.  The oldest person in this study is 11 and lives in London.  Everyone in the study early on were behind in their milestones...walking, talking, etc.  It is a product of having to work harder to hone your skills.  You focus in on one until you get it right instead of multitasking.  Once you conquer walking for example, you move on to talking vs. learning to walk and talk during the same time

The very good news is that the patients in this study, once they do catch up, they are perfectly fine and you cannot tell there was ever any issue early in their life.

We are so thankful for all God has done for her so far and how He keeps working for her.  We knew all along God made her one of a kind, and did He ever!!!  Our spunky little angel will just keep at it, not give up, and change the world one smile and laugh at a time!