Maddie and Caleb Open Up About Daughter's Rare Medical Condition

We want Evie to always feel pride in who she is, and all that God gave her!” says the Sister Wives’ couple.

Photo by: Hanna Hill Photography

Hanna Hill Photography

Since welcoming their baby girl Evangalynn Kodi Brush in August 2019, Sister Wives' couple Maddie and Caleb Brush have been busy adjusting to life as a family of four.

Now the pair are bravely choosing to open up about their daughter’s rare medical condition. On Instagram, Maddie posted the below note about their decision to share the news.

"This is one of the hardest things that Caleb and I have gone through and the decision to share almost as difficult, but after a lot of consideration, we realized that it’s the best thing for our daughter and there is a chance it may help other parents who may also be struggling.

Our beautiful baby daughter Evie has been diagnosed with FATCO syndrome (basically the abbreviation for lots of intense Latin words😅). It’s a rare medical syndrome where bones in extremities do not fully develop.

It wasn’t a complete surprise; we were aware of some abnormalities before birth. We knew something was wrong when we went in for a routine anatomy ultrasound at 26 weeks and what should have taken 45 minutes, ended up lasting a nerve-wracking two hours. It was then that the doctor told us that they couldn’t find all ten fingers and diagnosed the baby with oligodactyly (fewer than 10 fingers). Although this was better than expected, it was still heartbreaking news.

But when Evie was born, Caleb and I found out our precious little girl was missing more than just one finger. She was missing three fingers, a toe and her fibula. She also had a bowed tibia, a shortened forearm and some fusing in her fingers. It was at this point, the doctors diagnosed her with FATCO syndrome.

Photo by: Hanna Hill Photography

Hanna Hill Photography

We were hesitant to share Evie’s condition publicly for fear that our infant daughter would become the target of mean jokes and cyberbullying. That said, we felt not being open would be even worse and make Evie feel ashamed for something that makes her all the more special in our eyes.

As far as we have been told, there are fewer than 10 recorded cases and it’s unclear what causes the condition. She is healthy in every other way aside from the missing bones. As a family, we have decided to be open as we walk through this journey. We want Evie to always feel pride in who she is, and all that God gave her!"

TLC is proud to support Maddie, Caleb, Axel, Evie, and the entire Brown family as they share the struggles, triumphs, and immense love of their family with us all.

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