Hi,
My name is Gabriel and I have a cousin with this syndrome. Her name is Alexia and she is completing 4 months now. Her mother is very confusing about all of this, so as I, and she showed me this blog. Althouth being scared and impressed with this facts, we and all the family are hopeless that she’ll be able to live a satisfied life.
I’m writing because she still in doubt about how much she wanna know about this. So I’m trying to help her as many things as I can. I know that it’ll be hard, but we’ll succed.
I’ll try to post pictures of her, if my cousin allows.
Best regards to all.
If you enjoyed this article, please consider sharing it!
Hi Gabriel. It’s not easy and we all face challenges every day. But there are so many happy times that we all experience. There is a lot of information here that can benefit your cousin’s mother. Please have her reach out to the community to get hope.
Please pass on my email address to Alexia’s mother. I will answer any questions she has. There is such great hope for a fulfilling life for our babes. They really are a miracle. cordillh@yahoo.com
We all know what your family is going through, it was the same for us, it took my husband and I months to talk about it with anyone. But there is so much hope for these kids. The support of other families like on this website, helped us so much when we were finally ready for it. Your cousin is lucky to have such a loving and helpful cousin!
Loving and caring for a child with disabilities can be difficult, but it can also be very rewarding. Do your best. If you are a believer ask God to help you. Hope for the best and you will find so much good even in trying situations. I feel confident promising you that Alexia will be great source of joy in your life, even though you might get some heart ache along with that joy.
Your cousin may just need time. As soon as I got the news, I was online. I called my husband and told him what was said and wanted him to do the same when he went on his lunch break…..he didn’t. We met with the geneticist a week later and he was in shock. Especially when I started asking questions about the possibility of mental retardation that his eyes opened wide and he realized that it could possibly be severe. He just recently began reading my posts and other stories, and he’s more accepting. At some point, she’ll have to face facts….and like my husband, maybe she just needs more time. Good luck to her and your family.