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!
Annessiaโs Army Against Bohring-Opitz Syndrome & Epilepsy
ASALBO – Asociaciรณn Almeriense Sรญndrome Bohring-Opitz an initiative of Amaia’s parents
Brantley Bohring Live – Living life with our special needs son. Join us as I share our experiences and stories with our son.
Captain Jack and his mateys Swashbuckling through Bohring-Opitz
Daniela BOS Sindrome (Facebook & Instagram)
Elijah & Isaacโs life journey
Elliot insta @elliot_standing_tall
Eva Bermejo: Bohring-Opitz Syndrome
For the Love of Lauren Marie Graham ~ Bohring Opitz Syndrome โ Alaska
Hurricane Hudsonโs Journey – Bohring Opitz Syndrome
ฤฐpek’ le ilkler baลka gรผzel
Kyleeโs Place โBohring-Opitz Syndromeโ
Laylaโs Story – Bohring Opitz Syndrome – BOS
Libbyโs Journey- Bohring Opitz Syndrome
Lights for Lena: EVโs adventure through Bohring-Opitz
Mia Portuguese Princess โ Life with BOS (Facebook & Instagram)
Miss Chloe, The Princess of Everything Pink, and Her Curly Q Adventures
Okketje โ Bohring-Opitz Syndrome
The Super Rory (website & Facebook page)
Syndrome de Bohring-Opitz France
Talynnโs Journey: Bohring-Opitz Syndrome
Tayaโs 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 sunne@bohring-opitz.org. Thank you!
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 โBohring-Opitz Support Groupโ.
Bohring-Opitz Syndrome/ASXL1 