Family Stories

These family stories are from families around the world whose children have been affected by Bohring-Opitz Syndrome. They are stories about partnering with doctors, finding helpful resources, and seeking answers… but mostly they are stories of persistence and strength and hope.  We thank the families who have so generously shared their Family Stories with us.

Would you like to share your own experience (also in your own language)? Please contact us at


Ik snapte er niets van, ik leefde gezond, en deed alles wat van een vrouw die zwanger wil worden verwacht wordt… ik kon het niet bevatten, de kans dat het niet goed zou gaan was zo klein, en toch gebeurde het.Continue reading

Eva Ercolani

Eva was never sick during her 14 months of life, never had an infection. Even the doctors were surprised at that fact (they did not know her syndrome then). For us, Eva had a great immune system. In our eyes, Eva was a small baby like many others, who only was taking a little more time than others to develop. As soon as she could leave the hospital, … Continue reading


Hazel’s story: I was told I had the pregnancy that every woman dreams of. But at my 38 week check-up, the midwives were concerned about my baby’s vitals. They ordered an ultrasound and discovered she was very small. I was induced that evening in case she wasn’t thriving in the womb. After a day of … Continue reading

Annessia Rose-Marie Diaz

I found out I was pregnant in early spring of 2010. Annessia’s father and I were very excited and nervous of course. My pregnancy was pretty normal. I actually enjoyed being pregnant. I never had heart burn or sickness. At about 7months my stomach started to measure small, and I also had some fluid loss … Continue reading

Eva Bermejo

Our 21-month old baby girl, Eva Bermejo, is a frequent visitor to Children’s Hospital Los Angeles. When we first came to the hospital in June 2011, she was six months old, had severe feeding issues, was failing to thrive, had been experiencing numerous unknown respiratory infections and she was not breathing well. We had previously … Continue reading


Jackson’s Story -December 2013 I want to start Jackson’s story on a positive note. He is an incredibly handsome and happy little boy who is surrounded by people who are committed to making his life the best it can possibly be. He leads a fulfilling life and above all he is loved a tremendous amount. … Continue reading


Where do I start… My pregnancy was perfect, there were no problems at all until I reached 39 weeks and Ben stopped moving as much. I didn’t have a planned visit for the midwife so I phoned the hospital who asked me to go down to be monitored. They measured my tummy and I was … Continue reading


As I set out to write a story of Miranda, the first thing that pops into my mind is old familiar song lyrics, “how do you catch a cloud and pin it down?” She is amazing, challenging, magical, and profoundly an individual. However all of these traits might not be obvious at first glance.
The … Continue reading


Okke is our oldest son. He passed away on June 27, 2013. When I was pregnant, we saw on the ultrasound that something was wrong with Okke. He had a bilateral cleft lip and palate and clenched hands. We had seen what I already knew from early on. Something is not right with our baby. We … Continue reading


Dear Mom, dear Dad, The dream of one’s own child…who doesn’t dream about it? So, mum and dad. They had to wait so long for me. And what do they do, these expectant parents? They look forward to their baby and dream of a happy, rosy future. When will I say Mom for the first … Continue reading


Little angel Tiia-Maria Heikkinen (14.6.2012 – 26.12.12) from Finland. I have got the honor to tell her story as a family friend. She was born as a very waited child to her mother Maria and father Timo and bigbrother Lasse, 12-years. Because of mother`s high blood pressure the birth of the baby started as medical in pregnancy week … Continue reading


My name is Jaden Richards and if I could talk, I would tell you the following story about my life so far. My mommy (whose name is Melissa) and daddy (whose name is Andy) met in England when my mommy was on a business trip. Mommy is American and Daddy is English.
They fell in … Continue reading


Kylee’s diagnosis was undetermined until late last year(2013) when her test results came back positive for Bohring Opitz Syndrome. Kylee was born with breathing and feeding difficulties. She was misdiagnosed at birth with Arthrogryposis, but late last year we were told she does not have that. By creating this page we were introduced to several … Continue reading


Talynn Gurganus was born on 1/27/14. She came into the world at 35 weeks. She had to spend 3 1/2 weeks in the NICU at CHKD due to respiratory and feeding issues. During this time, we found out Talynn had Partial Agenesis of the Corpus Callosum. She had other genetic tests done because all doctors … Continue reading