Dillon’s Story

As told by his mother, Kelley.


Dillon was born on March 20, 2014. He was my second child, another boy. We were thrilled and his big brother Liam was probably the most excited of all of us. Immediately after birth we new something was “wrong.” What seemed like hundreds of nurses and doctors swarmed the OR where I had my scheduled C-section. In all the chaos a doctor approached me. All I could see were her eyes as the rest of her was covered in doctor garb. She said to me, “Do you have any history of Down’s Syndrome in your family?” To which I simply replied, “no.” She and my baby disappeared with the rest of the medical team. My husband quickly followed and I was left asking a million questions and trying to be reassured by the anesthesiologist. “These things happen all the time. I’m sure he’s fine,” he said.

He wasn’t going to be fine. For days we endured a number of tests with no answers. He looked like a perfectly “normal” baby. How could he possibly be sick? He had all his toes and fingers, the cutest cheeks, and the chubbiest little legs. Nothing about Dillon seemed abnormal except that he was “floppy” and had some trouble breathing. There was a lot of speculation of Down’s Syndrome due to a long line across his palm. Not to downplay the severity of Down’s Syndrome, but oh how I wish that was his diagnosis. On day 8 in the NICU, Dillon was diagnosed with Zellweger Syndrome. A fatal disease affecting the peroxisomes within each cell. Because each cell is affected, every organ and system in the body is affected.

I’ll never forget the day the doctor came in and said, “I know what’s wrong with Dillon.” After telling us he had Zellweger Syndrome she said, “He has about 6 months to live.” Devastation is an understatement. There really are no words to describe the feeling a parent has when those words are delivered. Dillon was released home after 11 days in the NICU. We chose not to bring all the fancy monitoring machines home with us. We knew his fate.

Instead, we brought him home with what he needed to be comfortable and live a “normal” life with his family, and especially his big brother. We were determined to live a life as a family. In between the many tears, seizures, anxiety and doctors appointments were a lot of lovely moments. Liam got to hold his little brother, we ate dinner together as a family, and my husband and Dillon watched the Bruins hockey games as any New England father-son duo would. In fact, Dillon’s life was nothing but love. He was surrounded by it and a lot of it. He knew nothing but the purest form of love. How many of us can say that or experience that? Five weeks after his birth, I awoke to give him his 5 am feeding and changed his little diaper one last time. He looked a little off, and I called my husband in. Within minutes Dillon took his last breath in my husband’s arms.

Physically letting him go was the hardest thing in the world I’ve ever done. Watching my husband walk his little body down our driveway into the hearse is a sight no one should ever see. It’s forever burned in my memory. Dillon’s memorial was exactly what we wanted. It was a demonstration of love. He knew and he was nothing but love and we wanted he and his legacy to be remembered as such.

Dillon has taught me so very much about life, love, family and what’s important. I have a new perspective and lens on life. Nothing will ever be the same. Some days walking through this world feels meaningless, depressive, empty. But other days I am able to see through my grief and be grateful for all those lessons Dillon taught me. I assume and hope that over time I will be fully happy again, not the same, but happy. I have so much to be happy for and so much to love. Thank you Dillon, for being my light and showing me what life is all about. It’s not about how long you live, but what you do with that life and you did so much in your 5 short weeks. Shine on, my love.