Bohring-Opitz Syndrome (BOS) is a rare disease. This map is an opportunity for families of children with BOS to meet and connect each other and maybe – one day that comes from meeting face-to-face.
We are rare, we are special – together we are strong!
Would you like that your child with Bohring-Opitz Syndrome has its own place on the map “Children with Bohring-Opitz Syndrome”? Please do not hesitate to send us a message at sunne@bohring-opitz.org. In addition to place of your child it is also possible to share your child’s name, a picture and/or your own website regarding parenting a child with Bohring-Opitz Syndrome.
Louis is our bright star with his beautiful sister Saibh protecting him forever in their orbit together as brother and sister..we love you both so much!
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Hi,
My name is Laetitia, I’m from Gap, in France. First, I apologize for my english which might not be very good…
My baby girl […] has been diagnosed with BOS syndrom. She has many of the caracteristics of the syndrom, feeding issues.. she has been in the hospital since she was born. She has not seen her home yet.
I was looking for help and information. Her dad and me are very sad and we do feel lost because of this syndrom. Many questions come to our mind like what’s going to happen to our little girl, how can we give to her the life she deserves? What does she need and many more.. I’ve read some of the family stories and theres a lot of joy and love but it also seemed to be a hard path…
We have an other question, how many have died from this syndrom ? Because we are scared to lose her…
We do not have this in France and I don’t know how to get in touch with the other french parents..
Thank you so much for your help.
Laëtitia
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