This week we're honoring Casey, who passed away on March 10th, 2016. Casey continues to help families with medical issues through Casey's Circle. Here's her story, as told by her parents:
Casey Erin Barnes came into our life on April 23rd, 2006. She was just three days from being full term (37 weeks). Casey came early, but not easily. Marty (Casey's mom) had a sudden and severe uterine rupture. Casey and her placenta left the uterus and floated into Marty's abdominal cavity. Luckily, Marty and Time (Casey's dad) were close to the hospital, where doctors worked fast to get Casey out, but she went about 30 minutes with limited to no oxygen. The APGAR was at 0 at birth, no breath, no heartbeat. After 5 minutes, the resuscitation team had a pulse; after 10 minutes, they had gasping breaths.
Casey's primary diagnosis was HIE (Hypoxic Ischemic Encephalopathy). Also, and as a result of HIE, Casey was diagnosed with Quadriplegia CP (Cerebral Palsy), seizures, many orthopedic contractures, and many other HIE side-effects such as hearing and vision loss. Casey was missing some basic reflexes, unable to suck, swallow, gag or blink. Without the ability to swallow, Casey's airway was in constant risk of severe cases of pneumonia that often escalated to Acute Respiratory Distress Syndrome - ARDS. A feeding tube was required for all of her nutrition and medications. Casey had many severe complications and a tough start to her life.
Regardless of the challenge or the pain, Casey fought through it all. Doctors initially gave a very grim expectation for Casey. Some said she would never go home at all. Others said if she did go home, she was unlikely to see her first birthday. Casey proved them all wrong.
She had a huge, pleasant personality to go with her incredible will and strength. Casey was 110% girl. If it was pink, purple, or sparkled, she loved it. Casey loved My Little Ponies and could watch it for hours. She enjoyed snuggling with Mom and playing guitar with Dad. When she was up for it, Casey also loved to swim, swing, dance, listen to music (especially Elvis), read, do crafts and hang out with her many friends. Casey was not always up for a lot, but we filled as many days with wonderful memories and adventures as possible. She got to hold an elephant's trunk in her lap, watch the sharks and stingrays swimming in front of her. She spent lots of time on her swing and in the pool. She had a wish granted where an entire theater was rented out just for her and her family and friends with a huge party in the lobby after. She was in dance and lit up the stage. She was a Girl Scout and the top cookie seller for her troop - she was pretty proud of that goal. She knew every word to every song from My Little Pony (including the movies). She was funny. She was a Daddy's girl and lit up any time he was near.
Each year Casey faced more and more medical challenges, and each day she had to fight a little harder. She saw more doctors and specialists each year than most of us would in our lifetime. After a very full, yet very short life, Casey passed away on March 10th, 2016, just before her 10th birthday. We could not be more proud to be her parents. Her light will always shine, and there will not be a moment that she is not in our hearts and on our minds.
She will be forever in our hearts. She touched many lives while she was here, and she continues to help medically complex children every day through her legacy, Casey's Circle.
To know Casey was to love Casey.