From the time the doctor had reviewed the ultrasound and it seemed that I had Circumvallate Placenta and my baby had Bladder Exstrophy. Whatever came out of their mouths next, is a blur and I’ll spare you all the medical details. I spent the next 70+ hours in a rabbit hole of research and google became my best friend (as much as I hate to admit that—I had to start somewhere) I quickly learned how rare BE was and how difficult it was to navigate, alone.

I was able to find John Gearhart, the number one Bladder Exstrophy doctor in the world. I reached out to his office, found help in the local Utology team and made contact. He gladly accepted Elijah’s case via a Zoom call, I cried. You would have thought I won a Grammy with the way I felt.

This man and his fellow, Dr. C changed our lives. They gave us the real, raw but most of all… they gave us Hope.

Elijah was born 1 in 50,000 and nothing short of perfect with Classic Bladder Exstrophy. His bladder was not only on the outside of his body, but also inside out.

At just three months old Elijah had his first ever surgery, his closure to put the bladder on the inside of his body. He endured them breaking his hips in 4 different places, being bed ridden with a mermaid wrap so his legs couldn’t move with rods and pins with a lot of pain for . But he NEVER STOPPED SMILING.

We were in Baltimore for nine weeks and settled right in to making John’s Hopkins our second home, they LOVED our boy.

Fast forward to our second stay and Elijah’s second surgery at just ten months old and a two week stay. He was a rockstar through it all.

These stays and procedures have racked up quite alot of medical debt and he has several more surgeries and hurdles to overcome in the not so far future.

So any and all help is very welcomed we would be forever thankful!

We are beyond blessed to call this now 18 month old, climbing, walking, smiling boy ours.

While he has a lifelong disability, we firmly believe that he has a true purpose and his journey has just begun.