Meet Henry and Archie!

This is Margo! In August of 2024, Margo was diagnosed with a rare genetic disorder called Rett Syndrome. It’s a neurodevelopmental disorder that impacts every aspect of her life, including her ability to talk, walk, and eat. There is currently no cure for Rett Syndrome. 

We first noticed symptoms of Rett (although we didn’t know it at the time) at about 8 months old, which sits within the typical time frame for which children born with Rett begin a period of regression. During this time, we noticed Margo starting to miss milestones, and over the course of the next year, we watched her lose abilities that she’d previously gained. 

Some of the symptoms of Rett Syndrome that affect Margo’s daily life are : loss of purposeful hand movement and involuntary and repetitive hand movement (which is why you’ll see her with one or two arm braces on in photos - they are really helpful in allowing her to use her hands more purposefully by restricting her ability to keep them in her mouth), inability to verbally communicate, loss of movement and coordination, irregular sleep patterns, low muscle tone, and more. 

Despite every way that Rett Syndrome affects Margo’s abilities, she reminds us daily that she really was born EXTRA. Extra Joyful! Margo is always laughing or smiling. Her smile, and her laugh, and her joy is a blessing and something that I want to share with everyone!

I’m so excited to be sharing my sweet Margo with Born Abel, as well as bringing awareness to Rett Syndrome. 

- Faith (mom of Margo)