We have two sons, Deklan (17) and Kayden (10). They were both born with a very rare and servere heart condition. Between the two of them we have undergone a total of 7 open heart surgeries. We have been through some very tough times together, but I am happy to say that both boys are currently doing well. Thanks to the amazing surgeons and doctors that we have been able to rely on these past 17 years.
I spent almost 12 years not knowing why my boys were burdened with such a rare heart condition. Until finally in 2012 the Childrens Hospital of Philadelphia was finally able to provide me with the answer. Technology was finally able to test Chromosones. They were able to let me know that I have a ZIC3 gene duplication and that with every pregnancy I have there is a 50% chance this will be passed on.
Since then I have carried two additional baby boys to my second trimester, only to find out that both babies had inherited this gene and that the heart condition was even more severe. Forcing me to make the painful decision to terminate them both.
After seeking genetic counseling, we were referred to a fertility specialist. This specialist informed us that there is a way to eliminate the rizk of passing on my defected gene and to guarantee us a healthy baby!!! Which ofcourse we were ecstatic to hear!!!
In order to guarantee us a healthy baby we will need to do "In vitro fertilization" (IVF). During this process they will be able to test each of my embryos and elimate the ones that carry the ZIC3 gene. Allowing them to only fertilize and return to me the healthy embryos.
Sounds so quick & easy right? Well unfortunately after further research we discovered that this process is actually quite expensive and something that our insurance will not cover any part of. That's where you all come in. If you can help us out in any way we would greatly appreciate it. Please share our story and this page with as many people as you can!!!! Thank you all in advance for your help!!!
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