Hailey was not diagnosed DS+ until she was 15.2 y/o. The best of the best ( I guess?) missed it year after year, were unaware, thought someone else must have tested her for it etc… Well, no one did. In 2008/9 Another DS parent read a post I had left on another E website begging for help. She got in touch w me just 2 months before Hailey was to undergo what we now know would have been useless brain surgery and guided me through the process of genetic testing to rule in/out DS. Obviously it was positive – after 15 horrifying yrs of non-stop szrs, 9 chemically induced comas to stop status and countless hospitals/drugs go round later we got the test results that changed everything.
Hailey is 21.2 y/o now, and though by no means “cured,” knowing what we’re dealing with has literally saved our lives. I would be honored to share Hailey’s story in hopes that it would carry a “Never, ever give up!” message as well as a huge thank you to Lisa Oelmann-Smith, her Haley and entire family for bringing us out of the fray and home at last. Finally, I’d like very much to express my inexplicable gratitude and thanks to The Foundation as well as to our DS family worldwide. Without this combo of info and understanding, we’d surely be lost by now. If you wish, you may feel free to look at a FB community page: https://www.facebook.com/HeroForHailey/