Parents: Pat and Tom
Hometown: Wilmington, North Carolina
Born: March 26, 1986
Casey Ruth’s story
“At 14 years old we found out our daughter had something that most children would not survive.”
Tom and Pat adopted Casey Ruth when she was a newborn. At the time, she was diagnosed with Down Syndrome (T21). They felt from very early on that something was different about her; she was very assertive and determined. Whenever they voiced their thoughts that they felt Casey was different somehow from most of her peers with Down Syndrome, they were told they were being foolish.
“Hindsight is a wonderful thing. I now know I should have had her genetic tests rerun, but I guess I was thinking everyone else was right and I was wrong. At two and a half, she had open-heart surgery. She was expected to be in the hospital seven to ten days. Thirty-two days later we finally came home. Eventually, she was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and then OCD (Obsessive Compulsive Disorder).”
By age 13, Casey had begun picking at her skin to such an extent that for weeks at a time Pat and Tom would have to stay up all night by her side because they were unable to control the bleeding. Finally, Casey’s pediatrician decided to run some genetic tests to confirm his suspicion that she had Prader-Willi Syndrome (a disorder of the 15th chromosome).
Pat remembers; “We got a call from the lab; they told us they had to redo her tests. When we asked why, they said they tested her twice and she has Trisomy 18. They told us that this was impossible… So, we allowed them to run another test. Sure enough, Trisomy 18 showed up again. They said she had 2 separate bloodlines; one is full T18 and one is full T21. So at 14 years old we found out our daughter had something that most children would not survive.”
Pat recalls being devastated, but quickly coming to terms with the fact that there wasn’t a thing to be done about Casey’s condition. Pat reflects, “I’m glad we did not find out until she was 14. What we didn’t know didn’t hurt us. With all the things they have said she shouldn’t be able to do, they obviously didn’t tell Casey, because she continues to learn and enjoy life.”
Pat’s wish for other families that are facing an adverse diagnosis that is full of uncertainty is to “ignore what they say your child can’t do and help them to be all that they can. I honestly think if we had known when she was born we would have babied and tried to protect her. Instead we pushed ever inch of the way and never took “no” for an answer. She has grown up feeling as long as she does her best, she has it made.”
“Casey just turned 18 and she is doing well. We are not without our bad days and weeks, but she continues to thrive. She even attended her school prom!”
Just recently they discovered that Casey’s mitro valve has significant leakage and she may need open heart surgery in the near future.