Having support and community resources can help increase your confidence in managing Bohring-Opitz-Syndrome (BOS), enhance quality of life, and assist in meeting the needs of other family members. Parenting is often challenging, and parenting a child with a chronic condition like BOS can add additional stress to the day-to-day challenges. It’s important to remember you’re not alone in your situation. There are people who have experience in supporting and caring for children with Bohring-Opitz Syndrome. They can provide information about all aspects of living with Bohring-Opitz Syndrome.
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”.
A child with Bohring-Opitz Syndrome will have a life that is different from than most children, but Bohring-Opitz children have delightful personalities and are extremely lovable. They will give you love that is totally unconditional.
Please feel free to meet these amazing families who have created their own personal Facebook Pages about raising a BOS child and see how they enjoy their wonderful children!
Annessia’s Army Against Bohring-Opitz Syndrome & Epilepsy
Captain Jack and his mateys Swashbuckling through Bohring-Opitz
Eva Bermejo: Bohring-Opitz Syndrome
For the Love of Lauren Marie Graham ~ Bohring Opitz Syndrome – Alaska
Kylee’s Place “Bohring-Opitz Syndrome”
Libby’s Journey- Bohring Opitz Syndrome
Lights for Lena: EV’s adventure through Bohring-Opitz
Mia Portuguese Princess – Life with BOS
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
Is this list incomplete? Please feel free to send us your Story about raising a child with Bohring-Opitz Syndrome. Thank you!