How do I talk to siblings?

Be honest and use language that matches the sibling’s age. Explain that the disease affects the muscles, that it is nobody’s fault, and that the family is doing everything possible to help. Make sure siblings know they can ask questions and that their own feelings matter too.

My child has just been diagnosed. What should we do next? What can we expect in the coming years? How do I explain the diagnosis to family and friends? How can I connect with other families? What financial support may be available? Which organizations can help us? How can parents avoid caregiver burnout? Where can I find reliable information? What questions should I ask my healthcare team?

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