Bohring-Opitz Syndrome Awareness day takes place on 6th April of each year. It is also known as BOS awareness Day. Taylor Gurganus was a co-founder of the BOS Foundation board. First BOS awareness Day was organized on April 6, 2015.
Why 6th April was selected for BOS Awareness Day?
6th April was selected for this day because it is the anniversary of the first BOS Support group on Facebook. This Group Support Group allow parents and caretakers of those Children who live with these diseases.
How to Celebrate this Day?
• Organize a party at a local restaurant or at your home and invite all your friends to join.wear your denim and gold denim and gold are selected for this day because of denim represents rare diseases and pass out BOS Awareness ribbons, coloring sheets, and flyers!
• Visit near children’s hospitals and pass out Bohring-Opitz Syndrome flyers. Ask staff to post them around the hospital.
• Distribute coloring sheets to your local schools, restaurants, doctor offices, etc. to educate families about Bohring-Opitz Syndrome.
• On social media, share information about Bohring-Opitz Syndrome.
• Join BOS Awareness Day Facebook Event!
Talynn’s is Second youngest Baby Girl with BOS Living In United State.
Talynn was born on January 27, 2014. At the time of her birth, she was transported to Children’s Hospital of The King’s Daughters she spent 3.5 weeks in the newborn intensive care unit(NICU).
She was missing 2/3 of her Corpus Callosum. After leaving the NICU, Talynn stopped gaining weight. She started having feeding difficulties. Talynn was treated by so many doctors but no one could tell why Talynn wasn’t gaining weight.
One Day Geneticist found that she had Bohring-Opitz Syndrome. On January 14, 2015, the genetic blood work confirmed that Talynn had Bohring-Opitz Syndrome. Talynn is the second youngest baby girl with BOS living in the United States.
Bohring-Opitz Syndrome’s only 40 cases in the world. Talynn continues to develop. Never let any of these labels to define who Talynn is. She will always be Talynn and we all help her be the best she can be!
What is Bohring-Opitz Syndrome?
Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are approximately forty known cases in the World. This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene.
The leading cause of death is respiratory infections. Majority of children with BOS have feeding difficulties, recurring respiratory infections, sleep apnea, developmentally delayed, failure to thrive, abnormal hair density & length, Wilm’s Tumors, brain abnormalities, silent aspirations, and the list goes on.
Symptoms of Bohring-Opitz Syndrome:-
As per the above drawing which is drawn by B.S Van in 2016. This image shows all the symptoms of this disease.
Treatment of this disease:-
The main cause of the Bohring-Opitz syndrome (BOS), Hastings et al  had proposed clinical diagnostic criteria for the condition. Ultimately, only five individuals are used to develop these clinical diagnostic criteria were molecularly confirmed to have BOS. Therefore, these diagnostic criteria are unclear.
Bos Awareness Day t-shirt