Have you heard about Firefly products? They are truly amazing! We have been blessed to be able to test out the Playpak, Splashy, and Scooot! Talynn truly loves ALL of them! The Splashy is one of my favorites! Splashy is a portable bath seat for kids with disabilities. It allows Talynn to be in the water … Continue reading Firefly’s Amazing Products
I AM. WE ARE. #BOSAWARE
I cannot begin to tell you how impressed I was to see all that were involved in the BOS Awareness Day on April 6th. So many people from around the world were #BOSAWARE! Bohring-Opitz Syndrome is growing. The number of patients has doubled in size since Talynn was diagnosed in 2015. It is increasing every … Continue reading I AM. WE ARE. #BOSAWARE
Ultra-Rare Syndrome Celebrates It’s Day in the Spotlight
Orlando, Florida (April 3, 2017) This year marks the third annual Bohring-Opitz Syndrome (BOS) Awareness Day. On April 6th, people from around the world will shine the spotlight on this rare disorder by wearing denim and gold, along with other awareness events. BOS is an ultra-rare genetic syndrome with less than 60 documented cases in medical literature as of 2015. This number is now estimated to be closer to 85 among parent advocacy groups, as new diagnoses are being made through more advanced and available genetic testing. It wasn’t until 2011 that researchers were able to identify BOS was a result of a mutation on the ASXL1 gene.