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Wren SueElla's Story
She was born at 37 weeks and was the tiniest baby we’ve ever seen at 4lbs, 12oz. Even before we had the chance to fully enjoy the miracle of our first child, the doctors were questioning a number of things and put her through a battery of tests. This included advanced genetic screens to rule out any possibilities that our prenatal testing had missed. We were sent home with a clean bill of health and closely monitored for the first few months, despite some setbacks.
We had concerns early on. Wren wasn’t hitting as many developmental milestones as most babies in their first few months (which is common, given that every baby develops at their own pace) and she started having what we referred to as “episodes” - she would turn red, tense up, hold her breath and scream. Our pediatrician at the time thought that it could be an advanced case of silent reflux, so we began vigilant monitoring once again. Then, for 30 days, it stopped. We thought we were in the clear.
We had no idea what was to come.
Wren started having episodes more frequently and it became apparent that what we were witnessing was more than just reflux. It was only after meeting our lifesaving and immensely gifted pediatrician, Dr. Courtney Weems, that we decided the best course of action was to take Wren to the ER.
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. She also suffers from another, less pronounced case of Culpocephaly, which is enlarged “horns” in the rear hemisphere of her brain. Most children who are diagnosed with PMG have it in certain locations, or lobes, and are affected with a variety of developmental delays. Wren’s case is unilateral and covers the entire surface of her brain, the rarest and most severe kind. 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.
As a parent, it’s impossible to convey the heartbreak and pain you feel for your child. It’s even harder to describe what it felt like that day to be told by doctors that our child could live a relatively healthy life but will need constant care for the entirety of it. Our dreams for her, for our family, and for our lives, were destroyed. Individually, we were emotionally devastated, but as parents and in marriage we needed to be stronger than ever for each other, but for her more than anything. The process of healing only started after a deep descent into a helpless and immense sadness. The grief and guilt and anger were overwhelming, but we realize that we could not be pulled into the dark void. We heard early on that “the only way forward is through” and that’s the only path we were focused on taking.
From there, the testing became more regular and the results more profound. 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. To put the rarity of her case into perspective: Wren is one of a dozen or so people we've heard of to have this genetic disorder combined with PMG, thus placing her around 1 in 700 million, statistically. She is the first GRIN1 patient most doctors have ever, or will ever, meet.
In the first two years of her life, we attended more than 150 doctor's appointments, 200+ therapy sessions, and have spent nearly two months in the hospital. We have a team of doctors in every conceivable specialty who oversee, what they say is, one of the most medically complex patients they’ve ever seen.
So. What’s next? Why share this all now?
Renowned author Renee Brown states: we can all find power in vulnerability and through bravery in sharing our story we find the hope of helping others. Our life went from the stresses of the corporate grind and living fast to measuring our days in minutes and moments. Our daughter has no blueprint, no roadmap, and no guarantees. We’ve been told by doctors that she may never talk, walk, sit up or move. Those people are no longer on our care team. We don’t live with the “if’s or the could’s” but the “when’s and the how’s” and surround ourselves with those who share that positive mindset. We will never let this define her, define us or, most importantly, define what she can achieve. 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.
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. We’ve enrolled her in studies, trials, and tests to help gain an understanding of helping her as well as other children who may face similar trials and tribulations. We’ve become medical experts, insurance gurus, and know her care routine forward and backward to the point where we get confused for doctors each time we describe her detailed history to someone at the hospital. We’ve sacrificed our careers and our lives to be caretakers and the best parents anyone has seen. And we’ve done it all through equal tears and cheers because she is our greatest gift. No matter what any chart or lab reports state, she is perfectly made in our eyes. She will require our full attention as long as we are able to provide it, and even though we are figuring it out one day at a time, it’s undying love, unwavering courage, and underlying humility which drive us to be better, to work harder and to give the most of ourselves, for her.
Putting this all out there is one of the scariest things we’ve ever done. To show vulnerability, angst, helplessness, and sadness is paralyzing. It has taken us a year to go through what we have to come out the other end in a place where we can find happiness. We understand “the beauty is in the struggle.” We share this not to seek pity but to inspire hope. Not because we want personal attention but rather to let others know that you don’t have to be silent in your grief. Because everyone, no matter who you are, carries a weight that is almost unbearable. In this world, people are divided because they believe their differences are too much to overcome when in reality we share much more in common than we want to believe. In our minds, the superfluous nonsense that we once thought was important or difficult is trivial in comparison. We are connected as humans through love and should do all that we can to support each other. We should be kind and remember that each person you interact with could use a smile, a kind gesture, a reassuring comment.
Wren’s journey reminds us of what is really important in this life: our family, who has been the solid foundation against the torrential gale and who has single-handedly gotten us through this. Our closest friends, who have reached out and been there when we needed them, time and time again. The people with who we’ve shared this story, piece by piece, have provided encouragement, hope, and much-needed hugs. Our care team works tirelessly to help Wren grow and achieve. The unbelievable folks in the GRIN community who are brave enough to share their stories and show compassion even with the burdens of their own challenging treks. If it takes a village to raise a child, it takes a city to care for this one. But she may be the most loved, cared for, and attended-to child we know and we are thankful for all those who have given us what we’ve needed when we needed it the most.
This is the season of hope, caring, and giving and it’s our hope to bring this to the forefront of the conversation. While we will never be able to change the way Wren’s brain was created, we can work to stop the physical manifestations of her disorder. We encourage you to share this and wear purple this month to support the ongoing fight of so many. Our hope is to raise money to help find a cure for GRIN, to help all those in need, especially those less fortunate with limited access to medicine, doctors, or research. Wren is an inspiration to us daily, and the sweetest, toughest, bravest girl we’ve ever met. We hope her spirit, resolve, and persistence challenges you to be the change you want to see in the world.
We have hope and we are grateful for your support in our journey to a cure.