Casey was a true miracle and like all babies changed our lives and had such a wonderfully positive impact on our family. We learned how challenging her journey would be before she was even born. We could never have imagined, however, how truly amazing and inspirational her journey would prove to be, nor how significant her impact would be on those of us who were fortunate enough to know and love Casey.
Casey's biggest challenge was Dandy Walker Syndrome, a brain malformation characterized by a large cyst in the back of the brain. As a result, hydrocephalus, or swelling of the brain, was already present and would certainly impact her development. She was also diagnosed with a Ventricular Septal Defect(VSD), a minor heart defect that would need to be monitored closely.
Many of the medical professionals who shared their perspectives with us did not have a favorable prognosis for Casey. However, what we learned after spending significant time with many people in the medical profession is that ultimately any outcome is possible for kids challenged with Dandy Walker Syndrome. There is a wide variance in the potential outcome of kids faced with Dandy Walker Syndrome. Some kids do extremely well while others find themselves in very difficult situations. Casey did have an extremely large cyst. Most medical professionals believed that there could potentially be a correlation between the size of the cyst and the child's overall development. However, there was no concrete medical data to support this theory. At the end of the day, any outcome was possible.
On December 27, 2001, at the Brigham and Women's Hospital in Boston, we welcomed our precious little girl who was born 7 pounds, 6 ounces. We had a short list of names picked out, but Casey seemed most appropriate since it means "brave". The range of emotions that raced through our bodies at that moment of her birth is difficult to describe. We were overjoyed to hear the feistiness that she displayed when screaming her little lungs off and amazed at the simple sight of such a beautiful little girl. On the other hand, we were saddened at the thought of what a difficult road our little girl had ahead of her. We were nervous and anxious with the prospect of making sure we did everything in our power to put Casey in a position to thrive. But above all, we were thankful that Casey had arrived and blessed that she joined our family.
After being examined in the delivery room and being allowed to spend a few minutes with her Mom and Dad, Casey was quickly moved to the Neonatal Intensive Care Unit where she immediately lived up to her name. Just four short days after her birth, Casey underwent surgery on her brain to implant a shunt, a device that assisted in draining the excess fluid from her brain. One month later, Casey went through her second surgical procedure to have a feeding tube placed in her stomach. The tube allowed her to eat, take her medication and most importantly, gain weight. Finally, at the age of 6 weeks, Casey, or "Casey-Girl” as we came to call her, had made enough progress to come home for the first time!
Her fiery redheaded, big brother, Tyler, greeted Casey excitedly and was thrilled to welcome his baby sister home. Giggling and laughing would instantaneously bond their big brother, little sister relationship. "Peek-A-Boo" and "Hide and Seek" would become a couple of their favorite games. Such a common, yet precious bond would teach Tyler to be gentle, caring, loving and protective. In turn, Casey-Girl would push herself to reach new heights that were thought to be unattainable. She was eager to keep up with Tyler and in doing so, developed an unbreakable will, fighting spirit, feistiness and determination that would not hold her back.
Casey-Girl would become accustomed to many doctors' appointments, a strict medicine routine, g-tube feedings, as well as, working diligently with Early Intervention Specialists. Keeping all this in mind, she would manage to perfect a smile with her chubby cheeks and bright blue eyes that could not go unseen and a knack for playing and clapping that could not go unheard.
In April, Casey-Girl would have another 4-week stay at Children's Hospital, Boston, to treat pneumonia and undergo heart surgery to repair her three heart defects. The next couple of months would prove to be most impressive. She excelled in her home visits with Early Intervention. She filled her social calendar with a Fourth of July Parade and Fireworks in New Hampshire, attended her Auntie Kerri and Uncle Tom's Wedding and enjoyed a fun-filled 3rd Birthday Party for her brother, Tyler.
In September, she had another short stay in the hospital to correct her cleft palate. She made a speedy recovery just in time to make an exciting move to a new house in Rhode Island where she would enjoy a new tradition of Daddy sneaking home for lunch. In October, Casey-Girl attended Auntie Kristen and Uncle Paul's Wedding. She also, like any good sport would, let her parents dress her like a blossoming flower to join 'Woody", a.k.a. Tyler, for some Halloween trick or treating.
As the Holidays approached, Casey-Girl was ready to share many surprising gifts. She developed her own means of communicating which included her mother's favorite syllables, "mum, mum, mum...".
She began to sit-up by Thanksgiving; pull herself up by Christmas and cruise and crawl by the New Year.
One of our luckiest and fondest memories of Casey-Girl's journey was being able to celebrate her First Birthday and Christening with a spectacular party with family and friends. How amazing it was to share how truly proud we were of her strength, courage and will!
Shockingly, on January 17,2003, Casey fell into cardiac arrest as a result of an apparent shunt malfunction. A few hours later at Hasbro Hospital in Providence, she passed away with her Mom, Dad, four grandparents, and Uncle by her side. We miss our little angel and not a day goes by that we don't think of her perfect smile. She continues to impact and touch the lives of those of us who were fortunate enough to know and love her. We are incredibly lucky and grateful to have had Casey in our lives, even for a short time. Although, Casey-Girl can no longer be with us, her many courageous gifts; models of hope, joy of innocence and play, and genuine love for family, will be locked in our hearts forever. We love you Casey-Girl!
The Casey-Girl Foundation, Inc. raises money for two worthy causes: The Make-A-Wish Foundation and the Dr. Joseph Madsen Research Fund through Children's Hospital Boston. The Make-A-Wish Foundation grants the wishes of children with life-threatening illnesses to enrich the human experience with hope, strength and joy. The Make-A-Wish Foundation strives to provide a meaningful and carefree experience for the child and lasting, positive memories for the entire family. The Make-A-Wish Foundation fulfills wishes with the hope of offering a welcome respite and just plain fun. Dr. Madsen's Research Fund through Children's Hospital Boston seeks to discover new ways to diagnose and treat neurological complications, including hydrocephalus, that impact the lives of children. This research project hopes to inspire a new generation of the best and brightest medical professionals to work on these critical issues. It is the hope of our family and everyone involved with The Casey-Girl Foundation that we will live long enough to see significant advancements in the treatment of these neurological disorders so that families much us like our family can see their children live a long and healthy life.
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