Just 11 days to go! Rare Disease Day is approaching. Join our Bohring-Opitz Syndrome Family with these frames for your social media profile picture and show your support on Rare Disease Day on February 28th 2022! twb.nz/bohringopitzrarediseaseday2022 twb.nz/bohringopitzrarediseaseday
Read MoreA new Family 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…
Read More
When I read Annessia’s story I felt overwhelmed, I went through a mix of emotions: resentment and fear but also hope, pride, admiration, love and joy. On 9/9/2015 Annessia was diagnosed with Bohring-Opitz syndrome. Please meet this strong and lovely princess. Many thanks to Annessia’s parents for sharing her story! You can read this new family…
Read MoreWhat a better day to share this new family story as the Awareness Day! 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…
Read MoreA new family story! 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…
Read MoreA new Family story 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 … (read more about Jannis)
Read MoreA new Family story! 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 … (read more about Kylee)
Read More
Bohring-Opitz Syndrome 