S.O.F.T. – Support Organization for Trisomy 18, 13, and related Disorders
The site contains resources for parents and family of children diagnosed with trisomy such as health information, support groups, and even an ebook “Care of the Infant and Child with Trisomy 18 or 13.” We found the book very helpful when Jordan was first born. We also used the growth charts and other statistical information to guide our care.
Be Not Afraid (BNA) is a private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. There is a lot of uncertainty when you receive the prenatal diagnosis of Trisomy or any genetic disorder. We got a lot of support from Tracy and her contacts.
Their mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring community that embraces ALL families impacted by the Trisomy 18 diagnosis of a much-wanted child.
“In medical literature, babies with Trisomy 18 are “incompatible with life.” Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey.” This family has had their little boy, who was diagnosed with Trisomy 18, for 6 years. She has a lot of great resources and stories. I particularly like her page for the “Go bag.” We had one for Jordan. I am only able read these blogs now. When Jordan was living, I just kept focused on hope. I couldn’t take the time and emotional space to integrate someone else’s experience.