Today, April 6th is marked by a global community of patients and their families living with Bohring-Opitz Syndrome (BOS) and it represents BOS Awareness Day!
We specifically use the word “marked” because using the words “celebrated” or “commemorated” could potentially stir up an entirely different set of issues. We’ve seen some parents write that Bohring-Opitz Syndrome should be celebrated. However, not long after such post another parent reminds us (as if we don’t already know) that other kids are medically sick, and moreover children have died due the consequences of Bohring-Opitz Syndrome. There are sibling who wish that their brother or sister is not “disabled,” marriages that are under pressure, couples who have become separated because the burden of having a child with Bohring-Opitz is very demanding, parents who need psychological assistance to survive the emotional drain of caring for their child. So in short, there is absolutely nothing to celebrate about Bohring-Opitz. Bohring-Opitz is no fun!
Someone once asked us the question…since we live it every day, do we need more awareness? If so, what type of awareness? An ‘awareness day’ occurs almost everyday in this world for something, but little is known about the impact or effectiveness of these awareness day events.
On the “world-wide-web,” “awareness” seems to mean sending a message, getting attention, and getting people to talk about the issue on social media. But what takes place on the day after the awareness day? And the day after that day…?
This year we took a step back and didn’t offer an online campaign for two reasons; 1) we didn’t want BOS supporters to feel that they had to choose between different campaign initiatives; and 2) there is already an abundance of online awareness actions. The possibilities to show your support for Bohring-Opitz Syndrome, and more specifically for the BOS Foundation is huge.
However, are we #BOSAware without an online campaign? YES, we are. We are #BOSAware every single day. Voluntarily. We all are. Today, and for the past six years by providing desperately needed information about Bohring-Opitz and engaging families to contribute to projects like Growth Charts, Best Practices, BOS Symptoms and Features, the BOS Map and Family Stories. We support current research studies and help to make diagnosing Bohring-Opitz syndrome easier with Face2Gene. We increase, extend and offer knowledge and informational resources to medical professionals worldwide who treat children with BOS. We assist medical professionals looking for participation in clinical trials and/or network connections with other medical professionals. We encourage and promote continuous research in order to improve the quality of life of our children.
We connect families and medical professionals everyday. We offer assistance to caregivers and families of newly diagnosed children via e-mail, phone, and personal visits. We help with language barriers and create a safe and friendly place to meet each other not just online within Support Group where practical, medical and emotional experiences and support is shared, but in person all over the world as families travel to meet-ups in the United Kingdom, the Netherlands, Italy and the United States. Together, all of our families are seeking answers and brainstorming ideas for solutions. We are mourning with our families and celebrating every little achievement of all of our children, which are huge milestones in our eyes. We do this every day!
We are very excited and proud that this year, April 6th, marks the sixth anniversary of the Bohring-Opitz Support Group. Our family has grown and together we have achieved a great amount of resources for our children. For this reason we want to use this day, April 6, 2017, the BOS Awareness Day, to thank Dr. John Graham and Dr. Bianca Russel and all of the researchers around the world for their engagement and continued Bohring-Opitz Syndrome research. We want to thank Face2Gene, the facial recognition software which helps to diagnose our rare genetic disease. We want to thank the BOS Foundation for participating in rare disease events and attending summits and conferences to help promote medical awareness in the United States.
But most of all we want to thank you, the families living with Bohring-Opitz Syndrome! Without your daily engagement, sharing of your experiences in raising a child with Bohring-Opitz Syndrome, your stories about partnering with doctors, finding helpful resources, and seeking answers, your stories of persistence and strength and hope, we would be lonely, and uninformed. You help to increase the knowledge of BOS and by collecting and publishing all your experiences and knowledge we strive to help one another and further encourage doctors and professionals to delve into this ‘knowledge’ database, which we hope motivates more future research.
We are grateful, we love, we aware with you! Thank you!
As a mother of a child with BOS, I have to say I am in no way glorifying Bohring-Opitz Syndrome by supporting and participating in an awareness day. I’m sorry some may feel that using “celebrating” as a word to describe it shouldn’t be used, but I am. I am celebrating my child and all the children on earth and in heaven as well as the families and those touched by this condition, because of all the hurtles these families and children have overcome. Yes, it is a battle every day to keep these kids alive and healthy, but I refuse to let anything negative tarnish the joy these children bring to this world. This awareness day is to show how united our families and loved ones are in this battle to want better for our children. So yes. I’m going to celebrate today because my child deserves the recognition for being the brave and incredible person he is in spite of Bohring-Opitz Syndrome.
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