Please feel free to meet these amazing families who have created their own personal Facebook/Instagram Pages about raising a BOS child and see how they enjoy their wonderful children!
Annessia’s Army Against Bohring-Opitz Syndrome & Epilepsy
ASALBO – Asociación Almeriense Síndrome Bohring-Opitz an initiative of Amaia’s parents
Captain Jack and his mateys Swashbuckling through Bohring-Opitz
Daniela BOS Sindrome (Facebook & Instagram)
Eva Bermejo: Bohring-Opitz Syndrome
For the Love of Lauren Marie Graham ~ Bohring Opitz Syndrome – Alaska
Hurricane Hudson’s Journey – Bohring Opitz Syndrome
Kylee’s Place “Bohring-Opitz Syndrome”
Layla’s Story – Bohring Opitz Syndrome – BOS
Libby’s Journey- Bohring Opitz Syndrome
Lights for Lena: EV’s adventure through Bohring-Opitz
Mia Portuguese Princess – Life with BOS (Facebook & Instagram)
Miss Chloe, The Princess of Everything Pink, and Her Curly Q Adventures
Okketje – Bohring-Opitz Syndrome
Syndrome de Bohring-Opitz France
Talynn’s Journey: Bohring-Opitz Syndrome
Taya’s World Living with Bohring-Opitz Syndrome
Tiny and Fierce: Living with Bohring-Opitz Syndrome
Tommy’s Story – Bohring-Opitz Syndrome
Is this list incomplete? Please feel free to send us your Story about raising a child with Bohring-Opitz Syndrome at email@example.com. Thank you!
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”.