tag:blogger.com,1999:blog-6163519338730923750.post2784787100916832568..comments2023-05-10T00:58:46.664-07:00Comments on Landons Letters: Abnormal PerfectionMaxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-6163519338730923750.post-79406238234338568372012-08-22T20:40:09.976-07:002012-08-22T20:40:09.976-07:00Sorry. The year of Laura's birth was 1992. Get...Sorry. The year of Laura's birth was 1992. Getting the child she was born with mixed up. She and my daughter Mollie are the same age.Lisa https://www.blogger.com/profile/09324961653370110887noreply@blogger.comtag:blogger.com,1999:blog-6163519338730923750.post-54553282574363590522012-08-22T20:37:22.336-07:002012-08-22T20:37:22.336-07:00The first thing to come to grip with is that every...The first thing to come to grip with is that everyone has abnormalities. The difference is whether it is expressed in a way that is visible or not.<br /><br />I'm glad that Ryan was there to talk with you. My cousin's child was born in 1983 with a diaphragmatic hernia. Because her internal organs were allowed to develop in her chest cavity, her right lung and her heart developed abnormally. In 1983 every child with that condition died within days or weeks. The children's hospital the flew Laura too had just gotten their first ECMO machine and Laura was the first child they used it on. She not only survived her first few weeks, on October 5th she will be 20 years old. She has been through the mill though. She has had so many surgeries that her body looks like a road map. At one point many years ago I was in a meeting with my cousin where she asked what to expect in the future. She fell to her knees when they told her that they didn't know. They were making this up as the go. But because I live in Atlanta with wicked traffic and a long commute, I carpool. My carpool buddy once told me that his first child, Robyn, was born with a diaphragmatic hernia. It was fixed at birth and she has led a normal life. She didn't even know what had happened until she was 8 and asked about her scar. I wept. I had to explain to Andrew about Laura. All of her pain and suffering has not been in vain. Many people have "normal" children because of all that she has been through.<br /><br />As for genetic testing, don't sweat it. In 2002 when I was diagnosed with a rare genetic cardiac condition there were no genetic tests for it. A few years later Generex got approval for the Familion test. It was considered experimental and insurance wouldn't pay for it. In 2009 7 genes were being tested, but my insurance would only pay for 5. I had the test, but my mutation wasn't in those 5. Since then, 12 genes have been identified and insurance pays to be tested for all of them. The acceptance of genetic testing is quickly being accepted. Keep an eye on it.<br /><br />I agree with you. If we are all abnormal (and we are since the garden) whose to say what normal is? Functional would be a better measurement. And functional can be enhanced.Lisa https://www.blogger.com/profile/09324961653370110887noreply@blogger.com