This section is for parents who found out via amniocentesis or some other way that their son or daughter will be born with an extra X and/or Y chromosome and have a rare genetic condition.
I can only imagine what you go through and feel when you find out this news during your pregnancy. It is hard enough finding out at age 25 in February 1996 about my diagnosis, much less in your situation. Regardless, I feel you are very lucky to find out this news now. You have the diagnosis and can learn about the condition and do everything possible to help your son succeed. You have the opportunity to meet others, and to connect with those who have dealt directly with this genetic condition. There are many Facebook and other social media groups to connect you with people to discuss your concerns. They would be glad to help and answer questions you may have.
Though you may not have heard of these disorders prior to receiving your prenatal diagnosis, I was in that same place when my diagnosis occurred. I have learned a lot and give back each and every day helping others to better understand what they are dealing with.
Over the past 25 years, I have spoken with and counseled hundreds of families in your situation since my diagnosis occurred. I speak from being there, having a lot of the symptoms but not knowing until after puberty and into my mid-20’s. I speak the truth and have seen many others go through similar decisions, I am well equipped to speak with you, your spouse, your family, and would be more than happy to do so. There is currently no cure for this condition, but medication, specifically testosterone therapy at least for XXY’s makes a world of difference and thoroughly helps with quality of life. Plus this condition is manageable the earlier you know the better. There is so much you can do so that your son or daughter can have a successful and fulfilling life.
It is important for us to be able to seek validation from others who have been there before. This section is dedicated to those just finding out their child will be born with an X and/or Y genetic condition.
If you have any questions for me or would like to set up a time to speak with me, please e-mail Stefan.
