Corinne Sophia was born on July 12th, 2011 at 1:27pm into the loving arms of her parents Emily and Ryan Moll at Mercy in Rogers, AR. Corinne immediately had medical complications and was helicoptered by the Angel One team to Arkansas Children’s Hospital in Little Rock. After several days of medical testing and amazing medical care Corinne was diagnosed with Zellweger’s Syndrome, a rare metabolic genetic disorder that affects normal brain development and leads to respiratory distress and in Corinne’s case heart failure. Corinne was back transported, again by the Angel One helicopter team, to Washington Regional Hospital in Fayetteville, AR so she could be loved by all of her friends, family, and big brother Evan. Corinne passed on August 10, 2011 at 9:16pm in the arms of her Parents.
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Best way to read Corinne's story from the beginning is to go to the left and drop down July and start with "Weekend before Corinne's arrival"
Tuesday, July 26, 2011
Day 15-16 Corinne diagnosed with Zellweger's
The results were in the “building” and we were just waiting on the Geneticist to let us know when he could review them with us. At this point I had “googled” Zellwegers and got very little information. I know I have said that Zellwegers is “rare” but I don’t even think at this point I realized how rare it was. It wasn’t until just recently that I found out that many of the doctors that had treated Corinne didn’t know what Zellweger’s was.. they knew it sounded familiar and was a genetic disorder but they didn’t know the specifics, but let me also say I found out during this process that there are literally hundreds to a thousand genetic disorders. So during my google search I read things that implied Evan could, down the road, have health problems that were terminal, that this could affect our “future children”, this could not affect Evan but he could have a baby that had Zellwegers. Again I broke down. Could my entire family be taken away from me?? So on Tuesday evening we met with the Geneticist. He confirmed Corinne had Zellweger’s and considering her current condition and medical problems he didn’t think she would have a long life expectancy, but you can never predict. He told me that it was not accurate Evan could down the road have terminal ( or any for that matter) health problems related to Zellwegers, but he did confirm that Evan has a 66% chance of passing this gene along to his children and that this was a genetic disorder Ryan and I passed on to Corinne and there is a 1 in 4 chance our children could have Zellweger’s. In many ways we were relieved to have answers. We asked doctors if they felt like we would have a few more weeks or months still at Children’s. They said yes unless Corinne was to get worse and pass away. So Ryan and I found a furnished apartment, made plans for Ryan to start commuting back and forth between NWA and Little Rock so he could return to work, hired a babysitting service to help with Evan while I was at the hospital. We thought we had it all figured out. I was excited to have Evan with me! And to start a "normal" life with our family of four!