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Family Stories

Reading our family stories helps us realize the importance of ‘connecting’ with others who know where we have been, where we are, and where we are going ~ with perseverance and HOPE!

Please Note: For those of you that are still searching for a diagnosis for yourself or your child or those that have just received one, take a slow deep breath and please TRY to keep all of the Family Stories and medical information in perspective ~ I KNOW that’s easier said than done, but EACH and every child/adult presents differently and some of the more difficult stories that Families have shared are from NOT getting that diagnosis early [which SHOULD be AT BIRTH!], and possibly after one or more severe episodes ~ so please keep that in mind when reading through our site.


Also remember that several of these stories were written years ago and much has changed to SAVE BABIES’ LIVES in the last 15-20 years. Our more current Family Stories can be found in our more recent Newsletters.

However, having to live with a child’s death or being medically fragile after several crises before a diagnosis is not a so-called ‘negative story’ as some may wish to call it ~ they are REAL stories and stories of challenge and inspiration and a reality for several of our Families.

So please do not keep yourself from reading those stories ~ you may just learn how strong and resilient our Families really are!

If you have a family story about your child or yourself as an adult being diagnosed with an FOD and you’d like to share your story on our site, please feel free to contact us.


Additionally, if your story is already on our site and you’d like to send an Update and current picture please do! We would LOVE to hear from you!

Also be sure to sign and mail/fax the Release of Information form when submitting your story and/or picture.


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