Roundtable discussion

Family experiences with orthopedic surgeries

This discussion included the perspective of parents of children with ASXL syndromes who have had experience with major orthopedic surgeries, including spinal fusions and foot/ankle reconstruction. Panelists include parents of children who had surgery recently and children who had surgery years ago.

Panelists

The Badmaev family portrait on a bench in a park. Laura's daughters, a child and toddler, sit on her lap on the right. On the left, her son Alex with Bohring-Opitz Syndrome sits on his dad's lap.

Laura Badmaev

Parent, Bohring-Opitz Syndrome
Ankle/foot reconstruction surgery

Selfie of Teresa on the left and Issac on the right. Issac is seated in a folding chair and wearing sunglasses. Both are smiling.

Teresa Locklear

Parent, Shashi-Pena Syndrome
Spinal fusion surgery and bunion/hammer toe surgery

Susan and Maddie are dressed in formal attire and seated in chairs. Madeline is wearing a bright pink sleeveless dress with silver sparkles and a silver sparkle headband. Madeline has her head on Susan's chest.

Susan Reed

Parent, Bainbridge-Ropers Syndrome
Ankle/foot reconstruction with Achilles lengthening surgery

Close up selfie of Rosemarie and her mom. They are both wearing glasses and smiling.

Rosemary Ross

Parent, Bohring-Opitz Syndrome
Spinal fusion surgery

 

Event recording