Having support and community resources can help increase your confidence in managing Bohring-Opitz-Syndrome (BOS), enhance quality of life, and assist in meeting the needs of other family members. Parenting is often challenging, and parenting a child with a chronic condition like BOS can add additional stress to the day-to-day challenges. If you are the parent or caregiver of a child with BOS, it might be helpful to talk with other parents who have a child with the same condition in our “Bohring-Opitz Support Group”.
Bohring-Opitz Syndrome is an ultra rare syndrome with worldwide less than 60 people diagnosed in medical articles. Of course much more children have been diagnosed with BOS by genetic testing in the recent years and we are a growing family. The “Map Children with BOS” in addition to our “Bohring-Opitz Support Group”, is an opportunity to find each other and maybe – one day that comes from meeting face-to-face.
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.
Our children have been fighting bravely in their sometimes far too short life here on earth. With love and care we cherished them. And that will not end – even after they are angels now. We want death not to be a taboo. All these children together with their families have a meaning, they are valuable and not forgotten. So this page, the “Memory Lane BOS Angels” is dedicated to our BOS Angels where we all can let parents, families and friends of BOS Angels know that their precious child did not fight for nothing in their lives, that we did not forget them and they will always stay in our hearts.
Would you like to share your own experience (also in your own language)? Please contact us at firstname.lastname@example.org.