Wren is an inspiration to us daily, and the sweetest, toughest, bravest girl we’ve ever met.

She was born at 37 weeks and was the tiniest baby we’ve ever seen at 4lbs, 12oz. We had concerns early on. Wren wasn’t hitting as many developmental milestones as most babies in their first few months and she started having what we referred to as “episodes” – she would turn red, tense up, hold her breath and scream.

After a series of tests, MRI’s and scans revealed the answer that shattered us: Wren was born with a rare neurological brain disorder called Polymicrogyria (PMG). In utero, her body had sent the wrong proteins to her brain during development and the entire surface of her brain was covered in tiny folds rather than being developed like a normal human brain.

Because of this, the episodes we were witnessing weren’t reflux-related, but instead tonic seizures, up to 10 a day on her worst days. She has also been diagnosed with intractable epilepsy; a grueling kind that would be nearly impossible to control.

We spent months working with an advanced genetic team to see if we could uncover the root cause and any other manifestations from it. After months of waiting, we were informed that everything stemmed from an incredibly rare genetic mutation on Wren’s 9th chromosome, called GRIN1.

Today, we are in a better place. We’ve worked tirelessly (through trial and error) to battle Wren’s seizures from 5-7 a day down to weeks without any activity. We’ve reduced her medicines by half. She’s made tremendous progress in therapy, which we measure in inch stones, not milestones. We’ve thrown away every book on what should be and decided to write our own. We’ve surrounded ourselves with world-class medical professionals and the best care team we can imagine.

Only Wren has the power to show us what she is truly capable of, and we will give her every chance and every opportunity to do so.