Davis Buckley

EDITOR'S NOTE: The following is from the October 2006 issue of the Heart to Heart Newsletter

Written by Karen Buckley

On May 25, 2005 our family was forever changed. Our second child, Davis Kinziger Buckley, was welcomed into this world and into our hearts. His big sister, Camille, could not wait to see him and hold him for the very first time, and of course, we were thrilled that our baby boy was healthy. We took Davis home with our dreams for his future and were happy that our family was complete.

At Davis' one-week well-child visit, his pediatrician detected a heart murmur, and we scheduled our first appointment with a cardiologist. The murmur was confirmed but was considered to be a minor peripheral pulmonary artery stenosis. We were not worried as we were told that it would not cause any ill effects and would probably be gone before Davis was a year old. Little did we know that the cardiologist was the first of many specialists who would see Davis over the course of the next several months.

Before long Davis was having difficulty eating, was incredibly colicky and was constipated. We went back to the doctors. We then entered into a month of trying different formulas, acid reflux medication and Miralax. Nothing seemed to work, and before the end of his third month we learned that Davis had hypothyroidism. We saw yet another specialist, and started treatment immediately. We also took Davis to a chiropractor in hope that some relief could be provided for his extreme colic and constipation. We kept searching for something that would make our little boy comfortable and happy.

Our concern for other aspects of Davis' development continued to increase as well. He was still not smiling and did not seem to make eye contact. We saw more doctors to address these concerns. I was to return to work at the end of August, but Davis was not ready for daycare. For two months, until he was ready, my parents drove to Lakeville from their home in Wisconsin every Sunday to stay with Davis through Thursday.

At age 6 months, Davis had an appointment with the ophthalmologist. He suggested that Williams syndrome should be ruled out. It was ironic that Davis' most striking feature (those beautiful blue eyes) would also be the indicators of his diagnosis. Early in December, Davis' blood was drawn and on January 5th, we finally got the phone call from our pediatrician confirming what we already knew from the WSA website - Davis had WS. We had already had Davis evaluated for Early Childhood Special Education and he began to receive services at the beginning of January. At the end of January Davis participated in additional testing for physical and occupational therapy.

We tried so hard to help Davis and once we learned of his diagnosis, we immediately joined the association and began to connect with other families. We saw a geneticist/cardiologist to learn as much as we could. While we were grieving the news of Davis' diagnosis, we were determined to do whatever was necessary to help him have the best life possible. And we started creating new dreams. We knew that we were experiencing a great adjustment from what we had envisioned for our lives and Davis', but we knew we would get through it with time.

Davis started to show some real growth. And we began to truly rejoice in each step forward he made - like switching a toy from one hand to another or "talking" while in the car. He started to become more responsive to us and to his toys and he enjoyed baths with his big sister.

Unfortunately, time was not on our side. On February 24, 2006, our lives changed again in the most unthinkable way. Davis died due to cardiac complications that were undetectable while he was alive.

Our precious little boy was gone. While he did not smile often, when he did, he melted our hearts with his grin. We will remember that forever. Davis will always be carried in the hearts of those who loved him!

To donate to the WSA in Davis's memory, click here