New Patients Description

On Saturday, July 26, 2025, families from across the globe gathered at The Inn at Villanova University in Radnor, PA for a truly unforgettable event — the 6th Bohring-Opitz Syndrome (BOS) Family Meet-Up! The BOS community came together for a day filled with love, laughter, and the kind of connection you can only find among those who truly understand.

The BOS Foundation hosted its 5th BOS Family Meet-Up on July 29, 2023. The event was held at the Cytophl-Montco, just outside of Philadelphia. In attendance, were 17 BOS families for a total of 73 people. A professional photographer was on hand to capture the festivities. 

The BOS Foundation hosted its 4th Annual BOS Family Meet-Up on July 27, 2019. The event was held at the Jeffersonville Country Club, just outside of Philadelphia. In attendance  were 17 BOS families for a total of 97 people. This represented the largest attendance at a Meet-Up thus far.

Our son lived for only 64 days, but in that short time he changed our lives in ways that feel truly sacred. 

Ajeet was diagnosed with Bohring-Opitz Syndrome (BOS) during his admission at SickKids Hospital. 

Those were the moments when we first learned about this rare condition, and although it was overwhelming, Ajeet opened a new world for us—one filled with learning, strength, and connection.

Through Ajeet, we were introduced to the Bohring-Opitz Syndrome Foundation. Becoming part of that community gave us comfort and hope. Later, Ajeet also became part of BOS research, and because of him, we even had the chance to travel to the United States to meet other BOS families who instantly felt like our own. Ajeet connected us with people who understood our journey without needing any explanation.

We truly believe that Ajeet came into our lives with a purpose. His birth in Canada was not an accident—it feels as if it was chosen by God. He fulfilled a dream we did not even know was written for us. It feels like he came to this world to bring us here, to guide us to a new beginning.

My biggest advice to families going through this, whether you have been living it or are just beginning this journey, is to never loose hope. Grieving a living child is real and raw. It’s frustrating. It’s shattering, at times it feels unbearable. But never loose hope. Take it day by day, minute by minute and sometimes second by second. I often tell others that Grayson made me more human and alive than I could have ever dreamt of. I think I needed him more than he will ever need me.

Share your story by emailing taylor@bos-foundation.org

“Since we have known what syndrome our little angel was affected with, we have been even more admirative and proud of Eva, and of her fight. But we do not understand why our children must experience this. We are sure of one thing : Eva has transformed us forever and has filled us with love, not only us the parents, but also all those around her. She positively changed our vision of life and of the afterlife, forever. “

Despite the many medical challenges that Theo has faced, he continues to be a happy child. He has a very sweet and energetic personality. He loves anything with lights and music and is always smiling and laughing during his periods of health. Theo is overcoming his vision and hearing loss by working hard through his many therapies.

The doctor indicated that Daniel’s presentation fit mitochondrial disease and dismissed his dysmorphic features as nonspecific.  We had our answer . . . or so we thought. At age 18, the testing came back, we finally had an accurate answer as to Daniel’s genetic status.  He had Bohring-Opitz Syndrome.