• If yes, is there a certain age you feel is appropriate to discuss YOUR BABY'S diagnosis with your other children?
• Has learning about YOUR BABY'S diagnosis at an early age allowed you to modify any future plans?
• If yes, how?
• Some examples of how your family's plans could change include having additional children, moving into a one-story house or making structural changes to your current home, changing jobs, discussing your son's diagnosis with his school, or moving closer to family.
• This is the last section of the interview. I would now like to ask you about the care and support you and your family have received since YOUR BABY was diagnosed with Duchenne.
• Is YOUR BABY receiving care in a neuromuscular clinic?
• What type of care and treatment options have they recommended and what is your baby receiving?
• Has participation in the Duchenne Registry been discussed with you?
• Have clinical trials been discussed with you?
• Have you been in contact with any of the muscular dystrophy patient advocacy groups, local support networks, early intervention services, or other parents of children with Duchenne?
• If yes, have they been helpful and if so, how?
• If no, are there reasons why you haven't contacted them or why they have not been helpful?
• Has any other group or organization been of support to you?
• When considering all of the support resources you have been exposed to, is there one that stands out as being the most helpful to you so far?
• How has it been most helpful to you?
• What do you and your family feel you needed the most help/support with since your baby's diagnosis?
• Did you need more information about scheduling medical and therapy appointments following diagnosis, and understanding who needs to be a part of your baby's care team?
• We would like to hear any feedback you have regarding the care and support you've received since your child's diagnosis of Duchenne.
• Have you encountered any financial or insurance barriers when accessing care?
• Have there been gaps in the care or resources provided to you or your child?