|Olivia with her big brothers, Luke and Drew|
On September 4, 2008 our little girl, Olivia Caroline Hartig, came into our lives. Our 3rd child, but the only little girl, she was destined to be rotten as can be! Olivia was sick at birth and required oxygen and measures to regulate her blood sugar, so I wasn’t able to hold her right away. I remember the first thing I said to her when I was able to hold her was, “Mama loves you no matter what!" I look back on it now and know that at that moment, I knew life would be a little different, but I meant what I said; I would ALWAYS love her “no matter what”. She struggled for the first 4 days, but amazed us at how resilient her tiny little body seemed to be. Over the next few weeks, Olivia struggled to gain weight and slept a lot. She was as sweet as she could be and loved to snuggle, but this small voice in my head told me that something was different. After taking her to the pediatrician, Phil and I decided to go ahead with genetic testing (after all, we needed to have all of the information in order to best take care of our sweet Livi). On Friday, October 17th 2008, we received that call from the pediatrician that he needed to speak with us in the office. The drive there was surreal, as I tried my best to prepare myself. That afternoon, we were told that our sweet little girl had “Ring 9 Syndrome”. Her 9th chromosome is missing each end, and the remaining chromosome fused into the shape of a ring. Only 30 cases have ever been diagnosed worldwide, only 10 children are currently living with it, and there is such limited information that no one can really tell us much of anything. Wow! What a shock!
Immediately, we jumped into action, finding online support groups, finding out what doctors we should see to make sure that her little body functioned properly or at least to the best of its ability. Immediately, Olivia started receiving Early Intervention, Physical Therapy, Occupational Therapy, and Speech Therapy. She currently has about 10 different specialists at MUSC and one specialist at Cincinnati Children’s Hospital. Over the course of time, Olivia has also been diagnosed with severe Juvenile Rheumatoid Arthritis (JIA) and has multiple diagnoses secondary to the Ring 9 Syndrome. Livi is currently considered multiply disabled with global delays. While she does not talk, walk, or feed herself, she can certainly clap her hands, smile a gorgeous and infectious smile, loves the song “Twinkle, Twinkle Little Star”, and plays her own little games.
While life changed in an instant, we wouldn’t change anything about Olivia (except to take away some of the pain she experiences). Our lives are enriched by having her. Our compassion, love, and understanding for people with varying disabilities have grown astronomically. We have grown in faith and learned to accept help from others (something we were all built to do – rely on others and help when we can). She is a true joy, and as I had originally thought she would be, COMPLETELY ROTTEN!
--Brooke Hartig, Olivia's Mom
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